Month: July 2020

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.

Great day!!! I finally got to see my kids today after such a long time away. I haven’t seen them since January. They came over while my oldest had volleyball at the beach. When my daughter arrived she cried but I quickly gave her the biggest hug ever and she was fine after. It was some nice to finally hold them in my arms. A day I was long waiting for. It was a great day!!!

I’m finally home and no words can describe being able to be with my kids again. Very loving and helpful kids. They kept asking me if I need some help. They know I still can’t do things and need help and they were quick to help make some grill cheese sandwiches for us. I haven’t seen them for a little over 6 months. Thank goodness for FaceTime but in person is so much better. Glad to be with my kids again. I’m home to stay and in time I will play basketball with them again. I’ll hope and work towards that day to happen and make it a reality. In the meantime I’m just glad to be home with my kids again. 🙂