Help Jamie Boyle Beat GBS Guillain Barre Syndrome
JAMIE BOYLE - GBS STORY
Write up courtesy of my sister Stephanie Boyle
Jamie was at work the beginning of August enjoying his new job, then he started feeling numbness in his feet, legs and arms. He went to the hospital and was quickly admitted to trauma and continued losing feeling until he couldn't even breathe on his own. On day 3 they diagnosed him with Guillan Barre syndrome, an autoimmune disease in which your body's immune system attacks your nerves. The hospital sees maybe 1 case a year, with very little research as to what causes it. He was intubated and put into a coma. For the next 10 days, we watched him in his coma hoping things would get better. We heard from multiple doctors that with the severity of his case, the chance of him making a full recovery was very slim.
When he woke up, he was still completely paralyzed head to toe and was on breathing tubes. Jamie spent the next 60 days in intensive care and encountered many complications along the way. He has endured lots of pain, pneumonia, infections, 3 rounds of treatment for Guillain Barre, countless tests, injections and the feeling that his body was on fire. His entire body needed to be covered in cold face cloths and even used ice at times due to this. 
After over 2 months in ICU, he was transferred to the Stan Cassidy rehabilitation centre in Fredericton. They will work with him to regain the ability to do everyday tasks that we take for granted, such as learning to walk again, feeding himself, picking up a cell phone to make that call or text and basically just regaining mobility.
Healing will be very slow with months of rehabilitation ahead of him. This illness heals at a rate of 1mm per month, with best case scenario 1mm per week. He was 2 weeks short of getting long term disability which has left him with no income.
We're hoping to keep his spirits up which is imperative for his recovery by trying to take care of some of his worries for him for bills and equipment that will be needed. Any help would be greatly appreciated, let's show Jamie we care and we're all wishing him a fast recovery.
UPDATES
October 8th, 2019
Since arriving a week ago at the Stan Cassidy centre in Fredericton on October 1st Jamie has seen some progress. A little movement of the thumb, a slight movement in his left arm, he is getting more strength in his neck and back. This is all a great sign for his recovery.
There will be someone going to assess his house to find out what he will need to be able to get back there. He would like to THANK EVERYONE for their generous donations in advance and know that they will be put towards accessibility equipment for his home that he will be needing once he gets out of the rehab centre.
October 25th, 2019
Jamie was sent to Saint John for plasma exchange treatment. He had not seen much progress and the rehab centre felt this was the best option.
October 30th, 2019
I have just finished my last treatment today for plasma exchange at the St. John hospital. The nursing staff, doctors at the Moncton hospital, the St. John hospital specifically plasma exchange department and the staff at and the Stan Cassidy Rehab Centre in Fredericton have made this a little easier despite the challenges I have faced. I even got a shave and shampoo while getting my treatment yesterday buy two amazing nurses. They make you feel comfortable and shared a few laughs. I know one thing live life to the fullest as in a split second things can be taken away. I'm heading back to Fredericton today at 3 PM to go back to rehab and further IVIG treatments. I'm hoping that these two treatments here will do the trick to get me back on my feet despite the poor test results I received last Wednesday from the nerve conduction test.
Arrived back in Fredericton for an additional 5 days of IVIG treatments.
November 4th, 2019
Day one of my first round of IVIG treatments at the fredericton hospital today. Four more to go.
November 15th, 2019
Day 107, attempted to stand up but was not able to. Today was a day that was a bit disappointing, I thought that I would've been able to as my legs continue to get stronger. I'm happy that I have seen improvements mostly my legs as before I did my plasma exchange treatment for five days in St. John and came back to Fredericton for five more days of IVIG treatment I didn't do much on the SCI fit machine. When I first went on it I was only doing 0.11 miles then I did 0.18 miles then I did 0.24 miles as my legs couldn’t really push the peddles down that much. This week after my treatments I did 1.0 miles on Tuesday in less than 15 minutes, on Wednesday I did 1.2 miles in 18 minutes and then on Thursday I did 1.5 miles in 22 minutes. I am happy to see if his improvements but I was so sure I could. I am working my but off up here so hopefully soon. This is by far the hardest thing I've ever done as a retrain my whole body to work again. Hopefully I'll be on my feet soon it can't come soon enough.
November 19th, 2019
Day 111 - 2 miles on the bike today, hit my goal in 25 minutes. No breaks.. My hope is to be walking by Christmas.
November 22nd, 2019
Day 114 Today was the first day I took my first steps. They put me in between parallel bars supported by a sling and I walked all the way up and all the way back. It's a start. I only want two things for Christmas this year and walking is one of them. It was nice to see my hard work is paying off..
November 26th, 2019
Day 118 . Today I realize how far I still have to go to reach my goals despite progress i've been making week to week. They put me in the sling today between the parallel bars and I walked up and down three times each.. Today was easier picking up my legs compared to last time. This is so hard and you kind of think am I ever going to get there. I got the drive but it's just crazy how something can take you out in hours but yet can take six months to a year to recover. I know as of today it will be sometime before i'm on my feet unsupported walking on my own but hopefully i'll get there as fast as I can. I asked them if I could have the bike in my room at night to further increase my physio each day, hopefully this will help speed it up. I know recovery wasn't going to be a sprint but I am sure as hell going to try. Miss being home.
November 28th, 2019
As of today it's been 120 days in the hospital. Great progress this week but still a long ways to go.
November 29th, 2019
Day 121 3 miles on the SCI FIT bike today in 31 minutes, no breaks!!!!! Going for 4 miles next week if they let me as there only half hour sessions and it takes 5 minutes to set me up. We’ll see next week!!!!
December 2nd, 2019
Jamie's long road to recovery from Guillain Barre Syndrome. Here on December 2nd, 2019 he started one of his first few attempts at walking between the parallel bars supported by a sling. None of this journey has been easy, the hardest thing he's ever had to do. Hopefully in time he'll be walking once again.
Day 124 back between parallel bars this morning, on the bike this afternoon followed by stretching after that. My start to the week. Another 3 miles on the bike today 32 minutes with the difficulty increased to level five. Last week I did 3 miles in 31 minutes on level one. Looking to get my legs stronger faster now.
December 4th, 2019
Day 126 back on the bike this morning and someone never showed up for their appointment so I got extra time on it. I did 4.3 miles 46 minutes on level 5 and no breaks. I was hoping to reach 5 miles but ran out of time. Legs feeling good!
December 9th, 2019
Day 131 Today I went on the bike and did 4 miles in 42 minutes on level 6. I decided i'm going to increase the level each week going forward to further increase the strength in my legs. Last Wednesday I have done 4.3 miles 46 minutes on level 5. The strengthening of my legs seems to be going well. I go on the bike every day.
Before going on the bike this morning they put me in front of the wall that contains bars for me to hold onto and grab to try and stand up from the wheelchair. It went better this time around as I get more lift off but I was still unable to stand up. The physiotherapists were happy as I'm getting close. With me increasing the difficulty on the bike each week i'm hoping the next time around i'll be able to. Next week i'll be heading back to Moncton hospital as the stan Cassidy rehabilitation center in Fredericton closes down for the holidays. I would then be returning back to fredericton on January 2.
December 11th, 2019
Day 133 Today on the bike I did 6.2 miles in 53 minutes! No breaks. I had extra time after my session and was hoping to hit 7 miles in 60 minutes but ran out of time. My previous best was 4.3 miles in 46 minutes. Things are coming along!!
Last night I was also able to bring my right arm up over my head and touch my head with my hand when I was in bed laying on my back. Felt good to be able to scratch my face or my head. That was the worst not been able to scratch an itch. The other worst out of this whole thing is when you have a damn fruit fly flying around your face and you can't do nothing other then blow at it lol.... Glad to have more mobility coming in my right arm.
December 12th, 2019
Day 134 today I did a total of 8.2 miles on the bike. 2 miles this morning in 20 minutes 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 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.
December 13th, 2019
In case people don't know the next time you get a flu shot please know that GBS is a possibility and this should be explained to you before you get it. Not many people know what GBS is but a patient that was here before me got GBS directly after getting a flu shot. The chances are slim but the chance is there. I know I can't get a flu shot as I have increased risk of getting GBS again. Know the risk before you get it as it's on the form they need to explain this to you before getting it.
Just found out today i'll be going back to the Moncton hospital next Friday December 20th for the holidays. I can't wait to see my kids.
December 18th, 2019
Day 140 looks like I'm heading to Moncton today a bed has opened up I am leaving around 1 o'clock. Looking forward to coming home for the holidays.
December 20th, 2019
Last night I surprised the kids by showing up to Caleb's basketball practice. They had no idea I was home in Moncton for the holidays. They thought I was coming home today. It was a nice surprise i'm glad to be home. It was the first time I was out in the public since this all started on August 1. Looking forward to getting out and doing quite a few things well I'm home. Going out for a family movie soon at the theater. I can't wait.
December 25th, 2019
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!
Some happy to see them and Merry Christmas to everyone! Hope you are all enjoying the holidays.
December 28th, 2019
Thanks to Cheyenne and Caleb for bringing me in a nice turkey dinner for supper. Our first home grown turkey and it was delicious! Way better then hospital food!
Glad to be home Christmas but sad at the same time as I know in a few more days I have to go back again and be away from my family. Just got to keep working out so I can get home as soon as I can.
December 30th, 2019
Went to see Frozen 2 tonight with Cheyenne and the kids. Caleb and Felicity loved it! Glad I was able to get out to the movies while I was home.
December 31st, 2019
Happy New Year's eve everyone!
Day 153 it's been basically five months now and all I can say is screw 2019 and let's bring on 2020! It's been a long year I am just thankful for the progress I've made. I can't wait to be back up on my feet and living life. Looking forward to coming home eventually and getting back to my family. I miss my kids and I'm thankful I was able to come home for a few weeks over the holidays. Bring on 2020!! I know I can't wait till mid 2020 when I can put everything behind me and hopefully be better by then. Looking forward to progress and changes.
January 1st, 2020
Happy New Year's! Wishing you all the very best in 2020.
Today is a sad day as tomorrow I will be heading back to Fredericton. It was nice to see my children, my family, over the holidays. I am however looking forward to getting my life back and getting back up on my feet. Can't come soon enough and I am ready to work harder than ever to make that happen. Looking forward to seeing my family again soon.
January 2nd, 2020
Day 155 I am now back in Fredericton and looking forward to getting back to rehab tomorrow. Hopefully in the next 2 to 3 months i'll be home. The previous patient here that had GBS was here for for roughly 6 months, 193 days total. Fed myself for the first time in five months on New Year's Eve. So hopefully within the next 90 days i'll be home to finish rehab a few days a week in Moncton.
January 3rd, 2020
Day 156 today was a good day, I really liked the different exercises they are now doing with me. With more movement in my arms they had me using the bow flex machine today. While I was in Moncton they had me using weights which I really liked as it further increased strengthening in my arms. After discussing it today they are now doing all kinds of different things with me to further increase mobility.
I was back at it again on the bike I did 5 miles in 47 minutes with the last mile I had them increase it to level 10 to help more on strengthening my legs. This was the highest level of been to yet so for the first 4 miles I did cardio followed by strengthening. I had a pretty full schedule today with extra Physio and OT as only six patients are back from the holidays so extra time was devoted to the patients currently here. Being away for two weeks they have noticed more progress and are now adjusting my program and adding more exercises since I am now able to do so. Looking forward to the next 90 days as that's my goal to be home in 90 days or sooner. Glad to be back with my recovery program.
January 7th, 2020
Day 160 I continue to make progress each and every day. Starting to get more movement in my left arm however my right arm is stronger as I am right handed. Today they did a sliding board transfer with me from the wheelchair to the bed and then back to the wheelchair basically unassisted. This is the first time doing it and went well. I'm also able to turn side to side in bed with ease. I am also able to lay on my side and lift my legs up in the air with weights attached on both sides. My legs continue to get stronger I am also able to kick the lower part of my leg forward now which I wasn't really able to do before. My left foot has begun to move, my toes are starting to move as well very little though but they are. The physiotherapist here said yesterday within the next three weeks they can see me standing up from my wheelchair. Today was another full day of exercises concentrating more on my arms and my legs working out a wide variety of different muscles. They had me on the bike again today and I did 3 miles in 26 minutes on level 10. I continue to wheel myself around to further strengthen my arms. They are really pushing for me to get into a power chair but I explain to them I want to work out my arms more to further help my progress. After hearing that from the physiotherapist I am really looking forward to what comes in the next three weeks. Hopefully i'll be standing up out of my chair and more. They also have another nerve conduction test scheduled here within the next two weeks. It will be nice to see the comparison between the two tests to see how far my nerves have healed. I will also find out if the neurologist plans on doing another five day treatment of the IVIG. With more movement in my right arm and right hand I am now able to operate my iPad without using the leg controls where my knees would hit the clickers to move the cursor and my right elbow would hit the clicker to click on the links. I am now able to use my hands and my thumb to do this. I still use voice control for typing as it is very time consuming and tiring using my thumb and holding up my arm after a while. This is it for the progress today but things are coming along and can't wait to stand up for the first time in over five months on my own within the next 2 to three weeks hopefully.
January 13th, 2020
Today I was scheduled for cardio class in the gym for physio. I went on the SciFit bike and did 3.1 miles in 24 minutes.
The 1st mile I pushed myself and did it in seven minutes. The last five minutes I increased it to level 10 for leg strengthening. After that during the day I went between the parallel bars for a while. One day at a time what a long journey so far.
January 16th, 2020
Day 169 Therapies have been going good this week. They have been working more on sliding board transfers out of bed and in. My bed mobility continues to improve as I'm able to sit myself up on the edge of the bed by myself from laying down position. My right arm continues to get stronger as i'll soon be trying to feed myself next week on my own with some assistance when my arm gets tired. My left arm i'm now able to pick up i'm starting to get stronger as well. They continue concentrate more on my arms and legs I am going walking in between the parallel bars pretty much every day now. They continue to see progress every day which is nice to see.
As for today I started off my therapies but due to swelling in my right leg they canceled sessions the rest of the day. The nurses noticed last night and the doctor looked at it today and now I have to go for an ultra sound to rule out DVT, blood clot which is common for people who have been paralyzed or bedridden. It's probably nothing but one thing after another. Lots of things have happened throughout this whole journey that I have not shared. Ultrasound is scheduled for 2 PM. Can't wait to put this whole thing behind me.
UPDATE ultrasound came back negative! :)
On a positive note I continue to get better. The neurologist came to see me yesterday while I was walking in between the parallel bars and was very happy with the progress i've made since I've had the plasma exchange treatment and the IVIG treatment. No further treatment is scheduled at this time or planned as I continue to progress and get better. The nerve conduction test is scheduled at the end of this month. He was very happy to see the changes in my arms and legs since treatments. At this point now it's all about rehab and in time my nerves will continue to heal.
