Author: Jamie

I just received a phone call from Muscular Dystrophy about an application for a stair lift for my home that was put in months ago. It’s not approved yet but it looks good and the guy doesn’t see any reason it won’t be. They will cover $2,000 if approved for stair lift for home. Should know by next week. A little bit of hope… the lift costs $3,200 but if approved they’ll cover $2,000. Hoping for the best.

I still won’t have barrier free shower which is $6,900 which I really do need. No programs for that but he said he’ll work with me to see if any other organization can help.

To sum it up, Muscular Dystrophy may be helping, he did say funds low, donations low but I meet requirements but our own government in which we pay into, won’t help. Hoping to know more tomorrow as he was going to speak to supervisor to see if can speed up approval. We’ll see, hoping anyways….

NB Housing Program denied the project to make my home wheel chair accessible in order for me to be able to go home. I am beyond frustrated with our government and I hope to god what I have been through others don’t have the same issues. For a system that we pay into and these programs are supposed to be for people to have help during their disability. It’s 328 days in hospital/rehab for me now.

NB Housing Program denied me of everything to get me home regardless of costs analysis and feasibility report from inspector. The project was doable. Now they are not being transparent and will not give me a detailed report of why denied. They beat around the bush so to speak with no details and facts. That is my home and the only thing they mentioned were two things, electrical panel and apparently water pipes from pressure tank going upstairs, wrong tubing supposedly. I already checked with electrician and no issues with panel at all. Tubing still checking on.

NB Housing Program Application Denied

I had a conference call with Rebecca from NB Housing Program and I did not get any report on reasons why not approved. I wanted a detail report to show me why where I’m living is not being approved so I can finally go home. She said it’s not their job to do so. Denying people by saying liability is vague, they should explain the reasons but won’t. It’s simple not to answer questions and that’s what their doing. They approve me then deny me.

Besides the electrical panel and water pipes I’m being told that where I live is not considered a dwelling or house. To explain this I used to supply pet stores across the maritimes and ship water plants across Canada and the United States. I don’t do this anymore and the bottom garage floor area was my office and business area. I lived upstairs and had this while I was in college taking business. Thé upstairs is the living area, kitchen, bathroom, living room, bedroom etc.. That is my home for now. They don’t consider it a home I guess.

The biggest thing is no transparency, no detailed report explaining denial. I’m beyond frustrated, today was a bad day. I’m just asking for a little help to get me home. What’s the point of having these programs if your not willing to help. Under the program I could have received $15,000 – $20,000 to get things done around the house to bring me home.

It’s frustrating, I paid into the system sinçe I was 16 years old. I’ve been let down so many times during this whole journey. The government has giving away so much money during this Covid-19 pandemic, which some people abused, which could work, or took advantage. I’ve been through a rough road with Guillain Barre Syndrome, where’s my help for these disability programs they speak of. I didn’t ask for this to happen to me it just did. I don’t know what else to say. Disappointed and frustration is an understatement at this point. I’m in disbelief that everything I’ve been through, there’s been more unnecessary challenges along the way. I don’t know what else to say…. There are things I need in order to come home.

It’s Papa John’s Pizza Moncton for me tonight. I’m treating myself to Papadias. I haven’t had take out or a treat since March when this whole Covid-19 situation started impacting New Brunswick. It’s been a while and I’m treating myself.

I guess that’s one of the good things I guess being at the Moncton Hospital as they allow patients to use Skip The Dishes and get take out. It wasn’t allowed at Stan Cassidy Rehabilitation Centre in Fredericton. It’s funny how it’s different rules for different places when it’s all Horizon.

It was between Subway and Papa John’s Pizza in Moncton. Papa John’s won!!! It was delicious. It’s better then the hospital food here that’s for sure. The food was pretty good at Stan Cassidy, better then hospitals but I am looking forward to going home though for a home cooked meal.

Well I’m back at the Moncton Hospital, day 317 of my recovery from Guillain Barre Syndrome. My new home for hopefully just a little while. Unfortunately no more private room which I had for a long time. Now I’m in a room with two other people on the impatient rehab floor. I liked the privacy I had for a while, hopefully I won’t be here long at all. Come Monday I’m going to be on people to ensure I go home right away. If I could I would discharge myself.

I may be frustrated with management that didn’t give me the courtesy and respect as others and listening to my requests and concerns. For 8 months and 12 days of my life i was in Fredericton at Stan Cassidy Rehabilitation Centre, what’s 8 months and 19 days really. I do however like to thank the team that helped me get to where I am today. There was some great nurses that I’ll miss, had some good laughs and they also made my transition there easy. I didn’t get chance to see everyone I wanted to say something to before I left but I did some.

In all the years nurses here in Moncton, old and new I was told when I arrived they never seen this patients coming from Stan Cassidy back here as usually they go home. They never seen it. I told them I was hoping they’d give me a week to get things set up at home. I was there 8 months and 12 days. Exact comment was what’s an extra week. Exactly, I know. They said more expenses then if I would have just stayed there, Ambulance ride, admission etc..

I’d like to also thank my physiotherapy team, Christa, Sam and Isabelle for helping me get where I am today. I remember first getting there going on the SciFit bike thinking to myself how the heck am I going to get better. Hardest time on that bike the first time and that was on level 1 that I couldn’t really do. Everything they did with me helped get me here today. My strength increased and at the end maxed out bike on level 20 now.

I remember the first video of me walking in parallel bars and my mind telling me again how the heck am I ever going to get better. However I stuck with it, worked hard and things started getting better. The program they had was good, they mixed things up and my progress started coming. It was no sprint but they got me better. I thank them all, Bravo guys!!!!

My occupational therapist Renee helped with my hands and arms and getting some of my independence back. My hands are still not recovered much but she got me doing some things. In time, we hope the nerves heal and more come back. It’s just time now. If nerves not healed enough, can’t do much really.

We had some good laughs, some of the things she had me try, key word try and do is frustrating as hell. I joked saying Renees treasure box of torture. Lol. She was my case coordinator, lots of talk, lots of planning about discharge. She knows me very well, haha, she knows how I think and she’ll forever be my conscience over my shoulder, lol I was there too long. She’s very good at her job and she also tried lots of new things. I’m glad I had this exact team looking over me. I appreciate everything they’ve done.

With the way things went today, I never got that video of me walking out the front doors on my own two feet. Management took that special moment away from me that I wanted since the first day I got there. I had my goals and was determined to accomplish what I came for. It looks like I’ll have to get a video of me walking out the front doors here at Moncton Hospital. It won’t be the same but I’ll have to take it.

To the team that helped me recover from Guillain Barre Syndrome. Thank you! Many involved, can’t mention all but everyone that played a part you have my sincere gratitude. Hopefully soon I’ll be home. And yes Renee I have a way to get home, lol I hear you over my shoulder now Hahaha I’ll take your recommendation under advisement. Little laugh we had today!

Well my rehab is over and my stay at The Stan Cassidy Rehabilitation Centre in Fredericton NB. Now I’m heading back to the Moncton Hospital unfortunately. This was my home for the last 8 months and 12 days. I came up here October 1st, 2019 after spending 60 days before that in the ICU at the Dr. Georges L. Dumont Hospital in Moncton. I became ill with Guillain Barre Syndrome on August 1, 2019. It’s been 317 days in total now I’ve been in Hospital/rehab and it’s not over yet. I was really just hoping to go home after my stay at Stan Cassidy.

1 Week Extension Requested

During the week I had asked for an additional week to get things set up so I can go home. One new doctor in particular was dead set at sending me to home hospital before sending me home as in Alberta that’s what’s done. I had a meeting with the medical director last night pleading my case on how I was able to get things arranged for home so quick for home support workers etc.. when it wasn’t really my job to really do so. Social workers here should have had that taken care of but I sent out an email to another social worker and I got results. Things that should have been done weeks ago. I got approval for care hours within hours of sending out my email. I got an agency as well the same day that could help me when I go home.

The director said I made a compelling case but not compelling enough I guess. It was probably the new doctor taking over for my main doctor that made the final call. The whole time here I was under the care of one doctor then the last few weeks a young new doctor. Wish it never changed.

Heading To The Moncton Hospital

They are sending me back to the hospital today in Moncton. I have to say that I am disappointed in the management at The Stan Cassidy Rehabilitation Centre for not allowing me the 1 week opportunity to get things set up at home. They didn’t give me the same courtesy and respect that other clients have had to get things done at home. The beds are not full here and there is no reason they couldn’t. What ever happened to common sense. I wish I had my other doctor here instead of the new one. I’m now exposing myself to another hospital when I could have just went straight home if they gave me that decency.

To top it off I have 1 hour to get out. I was just informed now. Thanks for the rush I appreciate it. Not how I expected to leave here. Now I’m going back to hospital where I don’t want to go, last place anyone wants to really go with Covid situation going on. All I needed was potentially less then a week but was not given the opportunity. I expected to be leaving here with a different feeling then what I am now. There was no need of this. Especially 1 hour to pack up and go. Love the courtesy.

Walking Out Of Rehab Moment Gone

They also took that special moment away from me where I planned on taking a video of the day I walked out those front doors on my own two feet. That’s something I’ve had planned and was working towards. Now that special moment is gone. Something that doesn’t sit well with me on what they did. That’s something that meant a lot to me. To be wheeled in on a stretcher back in October to walking out on my own is something I wanted to do. Instead I’m going back to hospital in Moncton and not home. Day 317 and my stay in hospital continues in Moncton.

Day 314 Guillain Barre Syndrome might not have started good with news this morning that I’m going back to home hospital but I did get video this afternoon walking in parallel bars not holding on to the bars. If you remember I did it for the first time on May 28, 2020 but I never got a video. I said I would next time and I did this afternoon.

At the start of physiotherapy this afternoon they let me practice sit to stand, then since I’m hooked to the sling I can practice walking not holding on to the bars. It’s nice to try and not have to worry about falling. Always like to see what I can do. I’ll always try. You never fully know what your capable of unless you try. I think I did better today then I did last time and I can only hope that it gets easier each time and I continue to progress.

The sit to stand from wheelchair continues to be an issue. They say I’m getting better at it but it’s a slow, gradual improvement, more like a crawl in my eyes. I can only finish the stand at about 45 degrees up. It takes a lot to do it. Nothings been easy with this whole Guillain Barre Syndrome and you got to work your butt off to get better. I’m hoping that in time, more rehab and more workout time at home it will continue to get better. Hoping to be able to stand up on my own to walk rather then being hoisted up. I’ll continue to work on it. I’ll get there, when that will be I don’t know.

As for now, only a few more days left here for rehab at the Stan Cassidy Rehabilitation Centre in Fredericton. Then hopefully I’m heading back home on Friday and not the hospital. I’ll wish and hope this becomes a reality but we’ll see tomorrow. Till then a few more days of rehab and we’ll go from there. It’s been a long road so far and unfortunately it isn’t over yet.

Well today was the day and just as I thought I’m being discharged on Friday and unfortunately I’m heading back to the Moncton Hospital. Not the news I was hoping for but it is what it is. I was hoping they would give me just two more weeks to get things sorted out to go home, but they didn’t. Now it looks like I’m heading back home but not the home I was looking for. More days ahead in the hospital…

I was really just hoping to just go home once I left here. It’s going to be close to a year or potentially more before I get home now. This has been a long road to recovery. It comes a time when I just got to go to my home. The decision may have been made for me to leave but if I have anything to do with it, I’ll be heading back to my own home on Friday. I’ve made a bunch of calls today so hopefully I’ll have better news tomorrow. The choice was made for me to leave but where I go is my choice. I can only hope that everything works out by Friday. I’m optimistic that it can but I’ll know more tomorrow.

Well it’s another week and I’m still working hard on my recovery from Guillain Barre Syndrome. Another day in physiotherapy on the SciFit bike. I’m on the hardest level, level 20, so hopefully in time my legs will be strong enough to stand up on my own. I can finish standing up when I’m about half way up but can’t do it all myself from the chair. That’s something I’m still working on, and may take some time to accomplish.

On the SciFit bike I’m working on Level 20 now and recently did 36 minutes for 5.48 miles. It’s a hard level but I feel my legs getting stronger as they work hard. Now I just got to keep working at it. The more biking, the stronger my legs should get.

Well tomorrow I find out what’s going on. This is a big week and not sure what’s going to happen. My discharge is this Friday but so many things up in the air right now for me to come home. Things are not ready for me and the last place I want to go is my home hospital. It’s day 313 for me in hospital/rehab. When I leave here I just want to go home. I’m hoping they will extend me for the last time till the end of the month. This will provide me a little more time to get things worked out for home.

This Covid-19 situation has caused delays in everything. I still need support workers at home for a while, that’s not lined up. I just need 2 more weeks really. I’ll find out tomorrow after their rounds but the possibility is there that I’m leaving this Friday. I have no control on their decision but I just don’t want to go back to hospital. I want to go home but just not back in hospital especially with this Covid situation going on. Really want to see my kids.

To be honest I don’t think I’ll be standing up on my own when I leave here. I really wanted to do this before I left but my rehab will have to continue from home. The day I do leave here I’m not getting wheeled out I’m using a walker and walking out on my own two feet. I’ll find out tomorrow when that will be, might be Friday. We’ll see!

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. 🙂