Month: May 2020

Well today in Physiotherapy I was walking between the parallel bars for the first time with no hands on the bars. I had to try it, I’ve been wanting to. They know me pretty well, they can see it in my face. It’s always good to see where you’re at too. What you can do and allows you to see how hard things really are and how much farther you need to come in your recovery from Guillain Barre Syndrome.

One of the days this week they had me try side stepping. I was able to take a few steps with no hands on bars. Not many but I did it. They also thought at the time I could do some walking forward with no hands. Well today I tried and I did it. I’m hooked up to a sling for safety but it allows me to experiment and try without the risk of injuring myself.

When I first tried it I only was able to take a few steps before grabbing the bars again. After several more attempts I was getting better. It’s the balance you need to learn all over again. I was able to walk the complete length of the parallel bars and I was also starting to feel a little more confident. I started getting a bit more control in my balance. Don’t get me wrong it was by far from perfect. It probably looked like I had a few too many to drink but I did it. It was also good to try at least.

I know I’m a hell of a long ways from ever walking independently but it was nice to try. Nice to see every bit of work I’m doing is helping towards my recovery from Guillain Barre Syndrome. Hoping in the future I’ll be able to walk again independently and hoping some day I’ll get there.

With hard work and determination that day should come. Until then I’ll continue to work hard and hopefully get my life back, my independence and more function in my hands. Next time I do it I’ll be sure to also take a video. Wish I did this time but I was more focused on what I was trying to do.

Well today is now Day 301 since Guillain Barre Syndrome started back on August 1, 2019. What a long journey!! When I was in Moncton there was one doctor in particular Dr. Leblanc that stressed it’s going to take a long time to recover. I knew it myself back then as I did my research. I knew my road to recovery from GBS was going to be a long one. Most people get their walking back within 6 months, others 1 year. I mentally prepared myself as I knew it was going to be a year for me plus. It’s day 301 now, I’m not too far off a year now.

GBS Recovery Takes A Long Time

It’s been a long road to recovery from Guillain Barre Syndrome and it isn’t over yet. I honestly see myself working my butt off for another year really. That’s my opinion. Recovering from GBS is slow, especially with the severe case I had, but my determination has gotten me to where I am today with the help from everyone along the way.

My Discharge Date Few Weeks Away

My discharge date was May 29th, 2020, this coming Friday but that’s changed. I don’t have a date given to me other then I’m a few weeks from discharge now. It could be anytime now. Every Tuesday they have their rounds and it was determined I’m weeks away now. The doctor and nurse manager spoke with me yesterday and mentioned if things were not set up at home and might take a week longer that I’d go to my home hospital in the meantime. I told them that the day I leave here I’m going home, I’m not going to hospital, I’m done with hospitals now. I think over 300 days is enough. I’m going home.

Before I leave here however I’m hoping to accomplish standing up on my own unassisted from chair but we’ll see. My rehab will continue in my home everyday with gym equipment I have. If I don’t get there before my time is up here, I’ll get there from home. I’m making plans now so my rehab progress continues from home. No outpatient services yet with this Covid-19 situation ongoing.

The Day I Leave Here I’m Walking Out

I may have been wheeled in on a stretcher by ambulance back on October 1st but the day I leave here I’m walking out those front doors on my own two feet. I’m not going in a wheelchair to vehicle to come home, I’m walking out on my own two feet with a walker. That’s one request I have the day I leave here is I’m walking out on my own feet.

Guillain Barre Syndrome Recovery Far From Over

I’ve come a long way, still a long ways to go but hopefully in time, with effort, determination and focus I’ll get my life back. All we have is hope and as long as we have that anything is possible. Don’t ever let someone tell you, you can’t do something. Use that to feed your fire to prove them wrong. People can do anything if they put their mind to it and never gives up. I’ll never stop working on my recovery. I’ll never give up! People generally recover well from GBS and I hope I will too.

I’m Coming Home Soon!

I can’t wait to soon go home. It’s also crazy to think it’s been almost a full year of my life in a hospital/rehab. This nightmare I’ve experienced this past year is not over yet but I’m in a better place now in my recovery. GBS took me out quick but I’m slowly getting back up. In the next few weeks I’ll be back home and I can’t wait to see my kids. 🙂

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