Author: Jamie

Well with my discharge coming up soon, I figured I’d push myself further with more leg strengthening in Physiotherapy on the SciFit bike. Lately I’ve been doing Level 15, was level 10 before, but today I put it up to Level 20 on the SciFit bike for my complete session. I maxed out the levels now, it doesn’t go any higher. I did 25 minutes on Level 20 and 3.5 miles. With Guillain Barre Syndrome you lose a lot of muscle mass at the beginning and it takes time to build muscle back. I need more strength in my legs to be able to stand up on my own out of the chair to a walker. I’m not pushing myself to hard, I can do it. I feel my legs and muscles in my quadriceps and also my hamstrings getting stronger.

My discharge is set for May 29th. I need to be able to stand up on my own before I leave. Working out my legs using the SciFit is the best exercise equipment to help reach that goal. Increasing intensity and resistance to level 20 will also help me to accomplish this I feel along with walking everyday. I only have two possible weeks left so time to push harder.

I’ve also been discussing how I would like to increase my upper extremity program. This will help by building more muscles in my arms. My hope that for whatever my legs may be lacking to help me stand up to a walker on my own that my upper body and arms can make up the difference. I’ve always had a strong core, strong shoulders, arms getting bigger so we’ll see. I started doing more sessions now on arms in physio too. I’ve increased the weight, so lower reps now with focus on building more muscle.

In occupational therapy I continue to work out my arms daily as well. I’m hoping that with all of this that everything will just come together and help me accomplish my next task. I know this is the hardest challenge yet I face in my opinion but we’ll see. Once I’m up walking I feel I can walk forever. I just need to be able to get to a stand up position. Hoping that the continued use on the SciFit bike at max level 20 now going forward till my discharge date will work. Time will tell and we’ll see how tomorrow goes.

I know tomorrow the plan is to try my first attempt at standing up between the parallel bars to start. We’ll see how it goes!!

Well it’s Tuesday and they had their morning conference meetings discussing patients here at the Stan Cassidy Rehabilitation Centre here in Fredericton. After discussions and the progress I continue to make from Guillain Barre Syndrome they went an extended me now until May 29th. That’s good and I’m okay with it as I haven’t finished what I started yet. I still need to be able to stand up to a walker independently. I’m not sure when that day will happen but it will come.

I also got a new doctor taking over my case as I believe my regular doctor went back to Ontario where his family is. I don’t think he’ll be coming back for a while. It’s always good to get a different perspective on things from different doctors. I’ve seen him around just haven’t officially met him yet. He still needs to review my file. I was informed of this today.

My previous discharge date was May 15th and now it’s May 29th. We’ll see what happens going forward. There is one hope and it would be the best birthday gift ever is to be home by my birthday. My birthday is in June. I’m getting close and when I can do it and consistently stand up to a walker on my own I’ll be finally going home I think. Looking forward to the day I start getting my life back and being home. It’s been a long time now, day 280 as of today but I’m getting better and that’s all that matters!!! 🙂

New week, new achievements and my walking in Physiotherapy with walker continues to improve walking a distance of 492 feet (150 metres) today. Farthest distance yet!! I’ve said it before once once I’m up I feel I can walk forever. Last Friday I walked 220 feet, now today I walked 492 feet. I walk as far as I can go in the scheduled time I have. My walking is getting better and my endurance and will has always been good. I don’t take breaks I walk the whole session.

They scheduled me this morning with back to back sessions this morning in physio which I was happy to see. The first 15 minutes or so was practicing standing up from wheelchair at the wall bars. After that I went walking with the walker in the halls. I’m glad I got more time walking. I probably had a good 40 minutes I’d say. I walked the farthest yet and it felt good in my legs. It was a good work out pushing myself farther. I felt it in my legs and that’s good. They’ll continue to get stronger pushing them a little more each day. Hoping to be soon standing up to a walker on my own one day.

Well today is just another day working hard on my recovery from GBS. Today is Day 275, and I’ve been in the hospital now for 9 months. It’s hard to believe. In Physiotherapy this morning I did some walking with the walker followed by cardio class on the SciFit bike. Every time I walk in Physiotherapy I walk farther each time within my 30 minute session. Today I walked 220 feet in total. I know I could walk more, I just run out of time. I feel I could walk forever once I’m up. My endurance is really good I fine.

Good Workout Today In Physiotherapy

After my walk I went on the SciFit bike and did 4.16 miles in 25 minutes on Level 15. The highest level I’ve been at but with basically perhaps 2 weeks left here I’m all in. I have to be able to stand up to a walker on my own out of the chair, so I’m increasing my leg strengthening program further. By the time I leave here this is something I need to be able to do and by darn I’m going to do what I came here to do.

It’s nice to know that my physiotherapist and I are on the same page. She wants me to be able to stand up to a walker on my own before I leave here. I want the same. I know my recovery is going to continue when I go home. I’m not going to be here forever and I want to go home but I need to be able to do this first. I hope that everything continues to improve, my legs get stronger and I can do this before my discharge on May 15th. If I don’t hit that date, I hope they give me the opportunity to get to this level of my recovery before I leave here. We’ll see when the time comes but until then I’m going to focus on more strengthening and recovery.

Walking Getting Better Each Time

As far as walking is going, it’s going good. I remember about not even a month ago when I started in walker I only went 30 feet. Then I think it was 50 feet, 120 feet, 180 feet and now 220 feet. My speed I think is improving, my confidence and overall it’s getting better. The more I do it the better I’ll get. Eventually if I get more time I want to make the complete loop around the gym and back. I need more distance and time now.

GBS Recovery Working Hard Towards Goals

On the SciFit bike I remember long time ago when I first got here at The Stan Cassidy Rehabilitation Centre in Fredericton I couldn’t do much on it. It was friggin hard let me tell you. I didn’t have much strength or movement. I could hardly push those petals down. Imagine only being able to do like 0.07 miles and taking a break at like 2 minutes to now doing 25 minutes straight on Level 15 and doing 4.16 miles. I’ve always liked numbers and tracking improvements to see exactly your progress you’re making. I’ve come a long way. It took a long time to get where I am today with the severity of my GBS but it’s coming. Hard work pays off and determination as well as the amazing staff helping you with your recovery. It takes a team to win!

Never Give Up!

I’ve been watching The Last Dance on Netflix lately of Michael Jordan. Amazing to watch really! I watched him play as I was growing up. Michael Jordan didn’t win a NBA Championship overnight. He had lots of failures along the way for his quest for the NBA title. He never gave up, fought hard and ended up winning 6 NBA Championships. With GBS, a persons recovery is not going to be overnight. If you put the work in, put your time in and are focused on getting the results you want anything is possible. It takes time and hard work though. Michael Jordan didn’t win by himself, it took a team effort. Mind you he probably won some games single handedly down the stretch of a game but a team effort.

If you’re going through GBS right now, put in the work, work with your team of professionals which will give you the best chance at beating GBS. I wish you all the best anyone going through this and best wishes in your recovery from Guillain Barre Syndrome. Remember these words, GBS recovery & Working Hard! They work together. 💪

After months & months of recovering from Guillain Barre Syndrome, I finally got some relief. Social Development has approved me to get a wheelchair, commode, shower transfer bench & shower bars. Finally!!! Some good news!! Some stress is off my shoulders wondering how this is all going to work out considering my discharge date is May 15th. Day 275 Guillain Barre Syndrome and something going my way for once. It’s a good day.
Today is officially 9 months now I’ve been in hospital/rehab. August 1, 2019 seems so long ago now.

This provides some relief off my shoulders but more things are still needed to get me home. Unfortunately the stair lift, ramp and small bathroom modification they won’t cover to get me home and make it wheelchair accessible for me. I’m definitely glad some of the stuff is covered as just the equipment alone is near $20,000. The stair lift is not covered and that’s $4,100 and the bathroom modification I’m not sure on cost as I’ve not been able to get an estimate yet.

I’m greatful for the help from social development for the equipment. Now I just need to figure out the rest as I only maybe have 14 days left here.

If anyone would like to help I do have a GoFundMe page. Any help and share would be greatly appreciated. Thank you! http://gf.me/u/xcvvzr

Well each day I continue to keep working hard on my recovery from Guillain Barre Syndrome. I continue to work out my legs on the SciFit bike, practicing standing up at the wall bars and more walking each day with walker. Today I walked 180 feet in the walker, that’s all the time allowed for, or my physiotherapy session. I feel stronger and I could have done the complete loop around the whole gym if I had more time.

Improving Week to Week

When I first went in the walker, I only walked maybe 30-40 feet. Each time I walked, I walked a little further. Now today I walked 180 feet!! I’m improving, it’s taken me a while to get here but I did. I walk a couple times in the parallel bars first to warm up my legs then I walk in the gym where the black lines are and out the gym door on the right. I walked all the way down to the cafeteria today. We’ll see how far I go tomorrow.

My discharge date is still set for May 15th after their weekly conference meetings today on patients. I also only have a few weeks left here maybe at the Stan Cassidy Rehabilitation Centre in Fredericton NB. I hope that within the next few weeks I’ll be able to stand up on my own from the wheelchair up to a walker. Most importantly I need to be at this phase of my recovery by the time I leave here.

I know my recovery will continue after I leave but I need to be at this point. This is and always has been one of my main goals here. I hope I can do it. I worked so hard to get to where I am today I don’t want set backs in recovery as mentioned before with no outpatient services being offered at home due to Covid-19. If I can stand, walk, I will be able to continue at home. I just need to get to this point.

I’m so close to my goal and I’m so close to maybe going home soon. I just got to finish what I started. If it wasn’t for all the staff here at The Stan Cassidy Rehabilitation Centre I wouldn’t be where I am today. Now I feel I’m on the home stretch and hopefully my strength and abilities will also continue to increase. Furthermore it’s now or never!! I choose now!!! Looking forward to the next 2 weeks.

Well I didn’t get a video of the first time walking with walker outside of the parallel bars on Day 265 but I got one on the second time on Day 266. My Guillain Barre Syndrome recovery is coming along. This day finally came. Getting better from GBS.🙂

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!!! 😉

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. 🙂

Day 260 and it’s the first time I stood up since becoming ill with Guillain Barre Syndrome on August 1, 2019 in Moncton. It’s now April 16th, 2020 and it’s the first time standing up from the wheelchair. It was a good day! My progress continues on.

This morning I ended up being late for Physiotherapy and I didn’t have enough time to get set up and go for a walk. My physiotherapist has been wanting to try standing up against the wall. We didn’t have much time to do anything else so she wanted to try. So we did.

To be honest I didn’t think much of it other then okay let’s try. I thought it was only going to be another fail but to my surprise I sprung right up. I was honestly shocked that had just happened. I’m standing up! It felt good though. I mean this was only like my 7th attempt at standing which I fully expected it to be a fail like every other time. Turns out Day 260 was the day! I stood up 3 times in a row today from the wheelchair. It shows me I’m getting stronger, I’m still healing and my road to recovery is not over. Today it was meant to be that I was late and to be honest I’m glad I was.

Standing Up Today A Success!

Going through Guillain Barre Syndrome you can’t help but to think am I ever going to get better, will the day ever come that I’ll walk or be able to stand up again? These are things that run through your mind. These are things that I sit here and think about at night. All you can do is just keep trying, work hard and never give up. It might have taken me 8 1/2 months to get here but I finally did it today. A day I won’t soon forget.

Walking independently is my next goal ahead in my recovery from Guillain Barre Syndrome. As always one day at a time!