Guillain Barre Syndrome - GBS

It’s crazy to think a year ago from today I finally was able to speak after 38 days after becoming ill with GBS. I can’t begin to tell you how hard and frustrating it was not being able to communicate with the nurses, the doctors and my family. I sit here today remembering this exact day that I spoke for the first time after 38 days a year ago. The day I got the speaking valve put in was a great day and Dr. Brideau and I had it all planned out to surprise my mother. She came in and I spoke.

I remember slowly but surely, step by step I was gradually getting things back. Dr. Leblanc always told us it’s a very long journey ahead in the recovery from Guillain Barre Syndrome. That it was indeed…. A journey that is still ongoing a year plus later.

One of the hardest things about going through Guillain Barre is not being able to communicate. Let’s put it this way lip reading wasn’t for everyone, lol 🙂. Some nurses I remember were better then others. Some were great at it but that was one of the hardest things for them not being able to understand me. For me it was just frustrating not being able to speak.

I remember my father, he was down right horrible at lip reading, lol 😆. I sit here and laugh about it now but that was down right hell…. lol Frustrating for us both. Then he brought out the dam letter board, lol . Man did I hate that thing. 😆 Spelling out each word by letters, let alone sentences took forever….. I just wanted to throw that dam letter board but wait I can’t move my arms or hands, lol so that’s out of the question… 😄

I can sit here and laugh about it today but each and everything you go through with GBS had it’s own challenges and frustrations. Nothing was easy! No matter how strong you are, you need to be even stronger going through something like Guillain Barre Syndrome.

During my recovery from GBS there are certain things that stand out more then others. This here is speaking for the first time or like eating for the first time. Moving my legs and arms slightly for the first time etc… I do know one thing, no matter how hard of a situation I was going through at the time, the nurses, doctors and all other staff that cared for me at the Georges L. Dumont Hospital made it that much easier. We had some good laughs no matter what the difficult situation I was facing with GBS.

In the future I will visit them sometime, just not sure when with this Covid 19 pandemic going on. I would like to see them all again. They helped get me to where I am today. I also did make a promise to one guy in particular, Rheal, that I would walk through those doors and I’ll have a ball in my hand. In time I’m hoping that day will come. For now I just sit here and think of where I am now to where I was a year ago. A look back in the past on my recovery from GBS.

The Moncton Hospital Physiotherapy Department continues to deny me outpatient rehab as I try and recover from Guillain Barre Syndrome. I’ve been home since June 25, 2020. This has been pretty frustrating. This was one of my fears of me going home as I wanted to be able to go to physiotherapy and continue my recovery from Guillain Barre Syndrome. This has not been the case so far.

I knew they shut outpatient services due to the Covid-19 pandemic long time ago but that’s been opened back up for a while now. I officially came back home on June 12th to the Moncton Hospital and it was back in operation then.

This past Monday my physiotherapist at Stan Cassidy Rehabilitation Center messaged me after coming back from vacation. She was in in complete shock and blown away that they continue to deny outpatient physiotherapy. They continue to say I don’t qualify???? The people that I know that’s left Stan Cassidy all got outpatient physio so I have no idea why I continue to have issues with everything. My physiotherapist was very disappointed that this is happening.

I haven’t had physiotherapy for a long time now minus leg exercises in bed. Frustrating indeed considering I want to keep moving forward but the last few months I haven’t seen progress. People need physiotherapy to have a chance at continuing recovery especially from Guillain Barre Syndrome.

Looking Into Rehab at Home Now

My mind set is I’m going to do it on my own now. If I’m going to get better it’s on me. I need to do rehab from home. In order for me to do that I need a treadmill and a ceiling lift and that cost money unfortunately. I’m hoping I’ll be able to eventually get that but being on CPP Disability income is lower. I’m going to see what I can do as I need to get this going since the physiotherapy at the Moncton Hospital is letting me down. I continue to get denied for everything NB Housing Program was another one.

It will also be nice to have that exercise equipment and ceiling lift at home if I can. With this Covid-19 pandemic going on outpatient services will eventually get shut down again anyway this coming fall. Having equipment at home will ensure continued rehab and hopefully further recovery from GBS.

After speaking to my physiotherapist from Fredericton though she’s going to try and get me into the Georges L. Dumont Hospital instead. Going back to where it all started maybe. Guillain Barre Syndrome started on August 1, 2019 for me. We’ll see what happens but hopefully I’ll get some until the rest gets figured out. I was talking to my old friend that grew up on the same road as me that has GBS too and he’s getting physio there. I’ll wait and see but referral for physiotherapy has been made.

One more hiccup, but I’m so used to it now. Nothing surprises me anymore at all. Frustrating but doesn’t surprise me. No matter all the challenges I’ve faced and there’s been a lot, I continue going forward. When I look back at this one day, I never gave up despite everything thrown my way.

A year ago today on August 11, 2019 I woke up from an induced coma after becoming ill with Guillain Barre Syndrome. It’s crazy thinking about where I was a year ago and the shape that I was in. I almost didn’t make it but I’m still here today fighting to recover from GBS. Guillain Barre Syndrome started for me on August 1, 2019, last year. The day it changed my life forever.

I sit back often thinking about the past, thinking about the struggles and my condition I was in. There are things that will forever be engraved in my mind like the day GBS started, the day I was placed in a induced coma, the day I woke up from my coma, the first time being able to speak and my very first meal. My recovery from Guillain Barre Syndrome has been a long one but certain days each year will hold a special meaning to me.

I’m thankful I woke up. I’m thankful for my recovery so far and I’ll also be forever thankful if my recovery continues from GBS. Now it’s just time but I’m grateful on this day a year ago I opened my eyes. Guillain Barre Syndrome almost took me out for good but I won that fight. Now my fight to complete recovery continues. I’m hoping one day that will come no matter how long it takes. Time will tell. Time is just a number, it’s the end results that matter. 🙂

A year ago today on August 2, 2019 at around 6:15pm I was placed in a coma for the next 10 days as a result of Guillain Barre Syndrome. My breathing became so compromised that they had to act quick. I remember this day like it was just yesterday. To only have minutes to say what you wanted to say to love ones not knowing exactly what’s going to happen. For the next 10 days I was in an induced coma.

Now it’s a year later already. Crazy to think where I was a year ago at this exact moment. Laying in a bed, in a coma and not knowing what life was going to bring me. I’ve not recovered fully, not sure if I ever will but I’ll work towards getting my life back. I hope that day will soon come.

A Year Ago Today I Was Placed In An Induced Coma, August 2, 2019
http://www.guillainbarresyndrome.ca/guillain-barre-syndrome-test-please-gbs-treatment-needed/

A year ago today my life was normal. I sit here today thinking on how it was just another day, working, walking, gardening, playing basketball with the kids and just trying to enjoy life. Little did I know last year on this day it would be my last normal day. I did not know as to what was going to happen to me tomorrow.

Live life, enjoy every moment as tomorrow is never promised. Today and tomorrow I think of the last year of my life. What I’ve been through and what I miss. Life is short everyone, live your life, don’t take anything for granted as we have no idea what tomorrow may bring. July 31st, 2019 and August 1st, 2019 will always have a special meaning to me and every year going forward.

Thank you, it’s always nice going to get the mail and a surprise birthday card in there for me. Thank you Irma and I’ll continue to work hard towards my recovery.

Thank you for the birthday card and all the best wishes you’ve given me during my recovery. Appreciate this and thank you so much! 🙂

Back here again at the Moncton Hospital. Long wait times here. I finally seen a doctor, it was the same one as last time. He didn’t order an ultrasound this time as he wasn’t concerned for a DVT deep vein thrombosis like the last time. So that’s good no concerns. Looks like antibiotics again for possible cellulitis.

On my way back home from Moncton Hospital again. Same issue with leg like last time. This time it was my left leg, last time it was my right leg. Same thing, redness ankle area, pain, swelling and hot to touch. Antibiotics again for 7 days, maybe it just wasn’t long enough last time. I read that when looking up cellulitis.

Here’s to hoping I don’t have to come back again anytime soon. Seems to be my second home since I’ve gotten back.

Since I’ve gotten home this is not what I expected as I have not received no Physiotherapy at the Moncton Hospital and I’ve been home a month. When I left Stan Cassidy Rehabilitation Center in Fredericton I expected Physiotherapy to continue. That’s what was told to me, a few days a week Physiotherapy outpatient services in Moncton. I never wanted to come back home to nothing and that’s what basically happened. I’ve worked so hard in my recovery from Guillain Barre Syndrome, I don’t want to go backwards.

I knew because of the coronavirus pandemic outpatient services were suspended in hospitals and rehabilitation centres. Before I came back home they lifted that again. At the Moncton Hospital since they had the patient lift in Physiotherapy I was told my walking would continue. This never happened. I haven’t done any Physiotherapy really since I’ve been back. No walking, no biking etc… and that’s something I was doing everyday in Fredericton. I never wanted to go back in my recovery, that’s my fear of being home. To beat Guillain Barre Syndrome I need my Physiotherapy….

Physiotherapy Is A Requirement To Beat GBS

A few weeks ago I talked to someone about the leg exercise program I was given when I left the Moncton Hospital. I told the guy, I don’t need in home Physiotherapy, I need Physiotherapy at the hospital to continue doing what I was doing in Fredericton that got me to where I’m at today. I need walking, biking, intense physio, not leg exercises in bed. He agreed, he said they are very limited to what physio they can do in home. The equipment I need is at the Physiotherapy at the hospital. He said he was going to make a few calls, I never heard back.

After seeing nothing going on the way my mentality is, I’m going to do it myself now. If I’m going to get better it’s on me as I’m not getting any Physiotherapy now that I’m in Moncton. I’m making plans now to do biking and walking at home on my own. I didn’t work this hard to get where I am for nothing. I’m going to keep working to keep going forward on my own. It’s a bit disappointing really all the extra challenges, denials etc.. for everything. Regardless I’m going to keep on going.

When I was at the Moncton Hospital someone told me I have to learn how to crawl before you walk. Yes, that may be true but I can walk when I’m up, I just can’t stand up on my own yet. Yes, that’s my challenge but Stan Cassidy got me to where I am today by doing what they did. It was working. To be honest to stop doing everything I was doing to simply do leg exercises in bed is ridiculous to be honest. My sit to stand was getting better, need more work on strength etc… and walking and biking everyday was working.

Physiotherapy, Continue With What Works

I don’t agree with just leg exercises in bed. The program I had was working and you don’t fix what’s not broken. With Guillain Barre Syndrome recovery time, muscle building etc.. takes different time for everyone. In Fredericton they get the worst of the worst cases for a reason, they are good at what they do.

After getting no where’s in the last month I contacted my physiotherapist in Fredericton. I had a conversation and she made a referral for me to be seen by Physiotherapy outpatient services here in Moncton. My doctor at Stan Cassidy said I need ongoing Physiotherapy. A referral was made so we’ll see what happens. I’m hoping that I can at least get some physio right away until I get things set up at home.

With this coronavirus pandemic I don’t want to take unnecessary risks or exposure by going to the hospital if I can avoid it. I’ll do physio at the hospital until I can do it on my own from home. I just need the equipment to do it. Something I’m working on but everything cost money. Hopefully I’ll be able to get some Physiotherapy here soon. I want my life back and in order to get better or have a chance at getting better I need Physiotherapy, the more the better. Hoping things work out and I get a call here soon.

Well today I went for a walk to get the mail today with my caregiver. Well I didn’t walk myself but someday I told her I would be going for a walk one day with her. That day will eventually happen but for now I have my powerchair. I know I can’t wait for the day and hope the day will come that I can stand on my own and go for walks independently. All I can do is hope. I always pictured myself coming home and walking in my home, walking in the driveway to continue rehab and more. Maybe one day but for now it’s just nice being home and getting out to get some fresh air. A little bit of life again.

It was nice getting out to go get the mail. We got the mail up the road and went for a longer walk past my house. We would have went longer but for some reason the battery on the power chair dropped quickly to one bar and had to turn around. We stopped for a moment and powered the chair down to see if bars would go back up. While we were off the road a ways on a dirt road we seen some butterflies and my caregiver took a few pictures while we waited. She got a few cool pictures.

After a little while the bars did go back up on the powerchair which is weird. We started the way back home and made it. 🙂 It’s nice getting out of the house. I just wish I could do all the things I did before. I love summer, gardening etc… I just can’t do any of this as a result of Guillain Barre Syndrome. Hoping that one day I’ll beat this and get my life back.

I’m thankful to be back home, thankful for a very nice caregiver and glad to get outside. Hoping someday I’ll have my independence back and be able to do things again. All I can do is hope and keep moving forward.