Author: Jamie

As part of my physiotherapy program they use the standing frame to help towards my recovery from GBS. Today this is one of the things I did in the gym today. It definitely feels good standing up and putting weight through your legs. They have lots for me to do today.

Some of the benefits of using the standing frame are healthy bone maintenance, leg muscle stretching, spasticity reduction, improved internal organ functions, improved posture, and overall range of motion improvement. I know I love using this, it just feels good. It feels good standing in an upright position. Without the standing frame, a person would be more vulnerable to deterioration of the body. The human body needs activity in order to either maintain its strength or even improve it. This is one piece of equipment I love as it’s very helpful in rebuilding your muscles and they keep your muscles from wasting away. I know if I have an opening in my schedule such as a gap between therapies I stroll down in my wheelchair and they usually put me in this for 30 minutes. I get an extra session for the day which is a bonus.

Some of the other things I did in Physiotherapy today was use the Bowflex machine. Physiotherapy and occupational therapy are working more on my arms and hands now. I do a wide variety of exercises targeting different muscles. This is an area they are concentrating more on as these are my weaker areas now, I had more muscle wasting. Now I need to rebuild those muscles especially the biceps as this will enable me to feed myself again.

Another piece of equipment I used today was the Vita Glide for my arms. They also had me up against the bars trying to stand up from the wheelchair.

These are just some of the things I do everyday as I work at rebuilding and retraining my whole body as result of Guillain Barre Syndrome.

Everyday I also walk between the parallel bars. It’s a slow process but I’m getting better.

Today I don’t only have Guillain Barre Syndrome to deal with but also the financial stress that comes with it. I’ve been dealing with issues with CPP Disability, EI and Social Assistance lately and quite frankly i’m disappointed with our government system. In the most difficult time of your life they abandon you. All that was going through my mind is what am I going to do. It’s not like I can go to work. I had to find help somewheres. If dealing with Guillain Barre Syndrome wasn’t enough I now have the financial stress that comes with it.

After a meeting last Friday with the nurse manager concerning perhaps Global News wanting to do a story with me she had mentioned to me about Ability New Brunswick a Non-Profit Organization. They offer assistance to people with disabilities that may be able to help. I thanked her and said I would look into it.

I looked them up on their Facebook page and messaged them. Well today I received a reply asking me to give them a call. I gave Ability New Brunswick a call and I explained the current issues i’ve been dealing with. I have a meeting scheduled on January 28th at 9:30am with Haley. Hopefully they can help or offer some guidance.

The issues I’ve been having is CPP Disability said they only received the medical report and not the actual application itself. My application started back in August. They told me I would have to resend both the medical report an application in again. They also told me that my file was closed and that there would be another another 170 day waiting period from the time they receive it. They would not reopen the file.

At this point I had no choice but to reach out to Social Assistance for help. I was 20 days shy of my disability insurance from kicking in at work as it was a new job I had started. I called them up and told them I would like to apply for Social Assistance. The lady asked me when was my last EI payment which I told her January 10th and it was for 7 weeks backtime. EI had had cut me off middle of November as they wanted more information concerning my condition, an update as sick leave benefits was 15 weeks your entitled to. Social Assistance told me that there would be a 7 week waiting period because I had received a lump sum payment from EI. On top of only being able to receive Social Assistance in like March she informs me that I was only entitled to $135 a month because I’m living at the Stan Cassidy Rehabilitation Centre. I was shocked…. Not only am I entitled to basically nothing I’m being penalized with a 7 week waiting period as a result of EI’s long processing times to update my file. The EI payment received was for money owed to me and for past bills owing not money to live on now. I could not believe what was happening.

This is the situation I’m in now. I’m fighting to get better from Guillain Barre Syndrome and now this. The financial stress I don’t need right now. This is just wrong. We pay into a system and in your most difficult time your left all alone or have to jump through hoops to get things done. Hopefully Global News will end up doing a story on how changes and improvements are needed in our Government system and programs available. In the meantime I hope Ability New Brunswick can help. Hoping the financial stress that comes with Guillain Barre Syndrome will work out. I’ll find out next week.

Well today I had to start a Jamie Boyle GoFundme page for Guillain Barre Syndrome and hoping people can show your support. With the latest news from CPP disability and the lack of support from our government I have no choice. I’m not sure what I’m going to do. It’s very disappointing to be going through such a difficult thing and now I have more stress on my shoulders.

I’ve recently shared with you the financial difficulties that comes GBS. It comes with any major medical issue that a person deals with in their life. This just happens to be mine. I’m very disappointed in our government system on how they let me down on my time of need.

I was 20 days shy from my disability insurance from kicking in at RBC as it was a new job. I don’t get it how CPP disability thinks it’s all right for a 170 waiting period. Then to say i’m going to have an additional 170 waiting period is not right. I mean I can’t even get social assistance right now. I explained more in my last blog post about Guillain Barre Syndrome and The Financial Stress That Comes With It.

If you can please show your support on my Jamie Boyle GoFundMe page with my battle with Guillain Barre Syndrome. Your support and donation is very much appreciated.

If your unable to make a donation please share my GoFundMe on Facebook. Sharing is caring! :)Thank you.

Caleb and Felicity were quite excited this morning!! Nice to see the big smiles on their face. This year has been hard as I love Christmas so much but unfortunately spending the holidays in the hospital. Kids have a way to brighten your day! I’m happy to spend Christmas Day with them.

Some happy to see them and Merry Christmas to everyone! Hope you are all enjoying the holidays. For anyone recovering from GBS find your reason to fight. My kids are my why, what’s your why?

Tonight I surprised the kids by showing up to Caleb’s basketball practice at the Arnold H. McLeod School in Moncton. They had no idea I was home in Moncton for the holidays. They thought I was coming home on Friday. It was a nice surprise and I’m so glad to be home for a little. When the kids seen me they ran up and gave me a big hug. It felt some good to see them, talk to them and be able to hold them in my arms so to speak or them hold me really, but I’ll take it. 🙂 It will be a tease to be home for a bit only to have to leave again but I’m going to make the best of my time while I’m home.

It was the first time I was out in the public since this all started back on August 1st. I wasn’t sure this was going to work out for me as planned as issues happened when White Cab arrived. The wheelchair I was in was too big for the ramp. The driver was great even though he was on a tight schedule he waited for the nurses to put me in another wheelchair that would fit. The nurses rushed me back upstairs, put me in the lift and switched wheelchairs. It was the most uncomfortable and painful but it was worth it for my kids. Nothing was stopping me from going. I couldn’t get a day pass so I had to go against doctors orders and sign a form. It was worth every painful second in that chair to go see my kids. It also felt some good to actually do something and get out.

The hard part came next after my son’s basketball practice and saying good bye to the kids and going back to the hospital. My son Caleb is always okay but my young daughter Felicity always takes it hard. It breaks my heart every time to see my daughter this way. My eyes tear up every time. My daughter was fine the whole time as we waited for my drive to arrive. It goes from joking, playing around then it hits her out of nowhere as she knows what’s coming. She runs into her mothers arms and the tears start coming. Cheyenne and I always tries to comfort her and saying it’s okay. It’s hard for me to watch this every time even as I write my eyes get watery thinking of those moments your child is hurting. I love my kids so much.

“My heart hurts to say good bye….”

After my drive arrived and Cheyenne and the kids left I messaged Cheyenne later to make sure my daughter was okay. This is what Felicity says to her mother, “My heart hurts to say good bye.” This is enough to make anyone tear up especially coming from a 6 year old girl. It sucks when something that happens to you affects your child and there’s nothing you can do other then reassure them everything’s okay, comfort them, ensure them I’m getting better and I’ll be home as soon as I can. It was a great day and a sad day too, I hate seeing my child hurting.

While I’m home I’m looking forward to getting out and doing quite a few things with the kids and seeing them as much as I can. We’re going out for a family movie soon at the theatre while I’m home, I can’t wait. Glad to be home!

Day 140 Looks like I’m heading back home to the Moncton Hospital today as a bed has opened up. I am leaving around 1pm this afternoon. Going back home for Christmas as the Stan Cassidy Rehabilitation Centre closes down over the holidays. I was surprised they close down actually but happy to come home and see the kids. Looking forward to coming home for the holidays.

Day 134 today I did a total of 8.2 miles on the bike, 2 miles this morning in 20 minutes and another 6.2 miles in 53 minutes this afternoon. I’m going to sleep good tonight with all the physio and OT today that includes leg exercises, arm exercises and all kinds of stretching. I’ve asked them to further increase schedule as I just got to get home. I am looking forward coming home for a few weeks at Christmas just unfortunately I have to come back after the new year.

Today was also the first day I was able wheel myself in the wheelchair in a long straight hallway. My arms and shoulders have been getting stronger and I decided to give it a try after supper to go back to my room and I did pretty good. Nurse lined me up and off I went…lol till I had to turn, lol when there’s a will there is a way! Glad more is coming back… 

The nurses here that take care me are beyond impressed with the progress they see on a daily and weekly basis. For me it seems slow but for them they see changes all the time. They always ask me what my goal is for today as I always have one. They like my drive I have.

The doctor came in this morning to check my mobility and progress and was happy to see how far I’ve come since coming here on October 1st. We are both aware how long this road to recovery will be as the nerves only heal at a rate of 1 mm a day. He asked me how tall i was and I said 6’4 and he said oh God, lol I bet you wish you were shorter right about now as it takes many millimeters to make up you’re a complete nerves system. Many more months to recovery but it’s coming one day at a time.