Month: February 2020

My issues with the Canada Pension Plan Disability Benefits, CPP Disability application continues with Service Canada. I’ve lost complete faith in our broken system. There is yet another delay in processing my application for benefits. A letter was sent to me in the mail at home. I’m shocked, come on Service Canada, do you even read your own forms??? The big X is my signature, I was paralyzed unable to write, unable to move, unable to speak. I had to do the X with a black marker in my mouth…The social worker was my witness and it’s clearly signed as it states. I’m frustrated now, more so then before. My social worker today said she cannot believe the hassle I’ve had with this.

Canada Pension Plan Benefits – Our Government Is Letting Me Down

I haven’t worked since end of July, 2019 because of Guillain Barre Syndrome. As you all know I have no money coming in and I explained this in previous posts with issues I’ve had with our Government and The Financial Stress That Comes With Guillain Barre Syndrome. A 170 day waiting period for my application for Canada Pension Plan Disability Benefits and them closing my file and them telling me on the phone to resend everything again and that I’ll have an additional 170 day waiting period is just plain wrong. CPP Disability also would not simply reopen. I am beyond disappointed with Service Canada.

Social Assistance Denied

As some of you already know I unfortunately had to apply for social assistance. They tell me I have a 7 week waiting period because EI gave me a lump sum payment for back time from November 2019 of 7 weeks on January 10th, 2020. Keyword backtime, money owed. Due to their long processing time to update my file for EI with my doctors note on my condition, this also penalizes me with a 7 week waiting period with social assistance.

Even after my 7 weeks of waiting period I only qualify for $135 a month because I’m living at the Stan Cassidy Rehabilitation Centre in Fredericton NB. Needless to say I’m now hurting and the stress is on my shoulders as I still try to recover.

I’m now asking for your help. I’m less then 30 days of being tapped out now. With no help from the government anytime soon. Talks are happening here now on my discharge and therefore the planning for me to go home. Furthermore equipment is needed, renovations needed for bathroom accessibility, and it’s adding more stress as the government let me down. These planning talks are a little hard as they need to plan for the worse and April 10th is coming fast.

If you have the ability to help, it would be greatly appreciated by supporting my Help Jamie Boyle Beat Guillain Barre Syndrome GoFundMe page. No donation is too small. Every little bit helps.

I also have the 50/50 board going on as well on my Jamie Boyle Fight With Guillain Barre Syndrome GBS Facebook page. You can also show your support by buying a square for $10 for a chance to win $500. Both of these will be used to help with bills, equipment and renovations for me to come home. If your unable to donate I ask you kindly to please share both on your Facebook. Sharing is caring too.

Sorry for the long post, lot of things for me to think about today. It was also kind of a tough day.
Thank you.

Well tomorrow my Gabapentin nerve pain medication, drugs for treatment of nerve pain and pain management for Guillain Barre Syndrome will be stopped. I have been on this for a long time. A nurse the other night asked me if I ever have any nerve pain and I don’t. This is unordinary for people with Guillain Barre not to have any pain. For me I had all my pain while I was in Moncton at the Dr. Georges L. Dumont Hospital. I had a lot of pain then. Severe nerve pain from GBS. I use to take Dilaudid every 4 hrs. for pain along with Gabapentin. It was bad before, so bad I was almost in tears. You can never get comfortable, that’s for sure.

Ever since coming to The Stan Cassidy Rehabilitation Centre I’ve tried to get off all the medications really. I was on a lot. They had me on Ativan for anxiety, sleeping pills, pain management drugs for nerve pain Gabapentin (Neurontin), Tylenol, a stomach pill, multivitamins etc… There was basically a cocktail of pills I took all at once. You have to wonder taking so many at the same time does to you.

The doctor came in to speak with me asking if I had any pain at all. I told him no I haven’t I had nerve pain for a while. I’ve already decreased my dosage on my own for the Gabapentin nerve pain medication as why take it if I don’t have any nerve pain. I’ve asked them a few times now to decrease medications or to eliminate them all together. Sometimes they need to gradually reduce the dosage to come off certain drugs like Gabapentin since I was on it for so long. Gabapentin is also the nerve pain treatment drug of choice for Guillain Barre Syndrome.

The only pain I’m having now is some discomfort and pain in my left knee. I’m taking Celebrex for it as needed but I haven’t taking it for a little while now. I would really like to get off all these medications and only take the ones when I need it.

I’m happy that I don’t have nerve pain anymore. I’ve heard of many people continuing to have severe nerve pain with Guillain Barre Syndrome. I’m therefore quite fortunate that’s not the case with me anymore. Gabapentin is one less drug and pain management medications I’ll be taking going forward.

Everything I do now in Occupational Therapy is all geared towards me doing things on my own such as brushing my own teeth with hand cuff. The hand cuff or universal cuff is adaptive equipment which allows me to everyday daily tasks like brushing my own teeth and feeding myself. I don’t have full use of my hands, such as my fingers and my wrists so this holds my toothbrush or spoon or fork for me since I can’t right now. Don’t have the strength or grasping power to hold things yet.

I started brushing my own teeth this week but I probably could have been doing it a few weeks ago. I have more movement in my arms and I was just waiting for them to make me a universal cuff for my toothbrush. I’ve been feeding myself for a while now so I could have been doing this too. I know it feels some good to be able to feed myself now and also brush my own teeth. Since this whole journey with Guillain Barre Syndrome started on August 1, 2019 has been to say the least a different experience. It’s just plain weird having someone brush your own teeth let alone everything else you can’t do yourself. I’m some glad to see some independence coming back to me. I hated asking for help since the beginning as it’s not me.

My discharge date is April 10, 2020 so it’s coming up pretty quick. It’s tentative as that date can be pushed out based on my progress. As long as progress continues with my recovery from Guillain Barre Syndrome and I’ll benefit from more rehab I’ll stay. The moment progress stops so does your stay here. Scary in a way! Occupational therapy has been working hard, working on goals and tasks for me to complete. All tasks I’ll need to do on my own when I go home.

I’m putting on my own T-shirts and can take them off but now it’s pants and shorts next to try. This will be a little harder since I can’t grab with my hands yet. I just wish my hands were back to normal as all tasks are harder to do. Who would have thought how hard it would be to put on a shirt? Pants and shorts will be harder I’m sure. Something in real life that would take less then a minute to do will be 5-10 minutes for sure now. That’s if I can even do it. We’ll see next week!

Next plan is transferring from wheelchair to shower chair. Everything I’m doing now is based on what I’m able to do or work on doing with what movements I have now. When I leave here I could be very well walking but if not they need to make sure I’m ready for when I go home. This is one part of occupational therapy is frustrating to me. If my hands were back to normal it would be fine but there not yet. Hoping they come back real soon.

Well today my dietician had a concern with my blood thinner injection enoxaparin, anticoagulant, Lovenox, which prevents blood clots because of the Isagenix Cleanse For Life I’m taking. The nurses give me my blood thinner injection Enoxaparin, Lovenox, every night before bed. The concern is with some of the ingredients in the Isagenix Cleanse For Life. It interacts with my blood thinner I’m on. This can cause bleeding. Blood thinners such as Lovenox help reduce the risk of developing Deep Vein Thrombosis (DVT) blood clots. With the restricted mobility with Guillain Barre Syndrome, blood clots are a concern.

The risk is moderate but the risk is there. Who knew how natural ingredients can interact with certain medications. The dietician was telling me about other natural ingredients and even fruit that can interact with medications. Grapefruit and grapefruit juice interacts with many medications. She told me you probably notice you don’t see any in the cafeteria. That’s the reason why! It’s too risky as people are on so many different medications. They don’t have it here for that reason.

I was a little disappointed to hear this today. As the Isagenix Cleanse For Life is a part of the whole program. I’ll have to wait until I’m off the blood thinner injections to be able to take it again. So no more Isagenix cleanse for me and metabolism booster till I get off my anticoagulants. I’m impressed though how thorough they were. Making sure what I was consuming was safe for me with the medications I’m on. The doctor and dietician now have both given me information so that I can read more on.

For now it’s just the Isagenix shakes for me. I have my strawberry cream flavour Isagenix shake every morning with a banana and a yogurt in it too. Taste amazing!! I do however have a new favourite being flavour being the birthday cake Isagenix shakes. Simply delicious! I love taking these everyday and the extra energy it provides me. It helps during the day for all my therapy sessions. More energy as I work on my recovery from Guillain Barre Syndrome. In time I’ll be doing the whole program again. Just need to wait to get off my blood thinner injections first.

Well today I started my Isagenix shakes which is now included with my Physiotherapy and occupational therapy as part of my GBS recovery program. This is a choice I made that I feel with help with my recovery. Today I had a delicious strawberry flavour shake made up by the kitchen staff here at The Stan Cassidy Rehabilitation Centre. They put a banana and a strawberry yogurt in it. It was great! I love making my own Isagenix shakes the way I like them.

Physiotherapy & Walking Between Parallel Bars Going Well

In Physiotherapy it was another good day in rehab. I did 5.2 miles in a little over 36 minutes on level 6…I went in the parallel bars today again as well and my walking continues to improve. Did my arm workout and hands in both physio and OT. Overall a good day, just working hard towards getting better. It takes a lot to impress me but my walking was really good. 🙂 I’ll get a video next time.

One of the doctors came to talk to me about my metabolism booster for Isagenix that I’m taking that contains green tea and alfalfa. Apparently it interacts with one of the medications I’m on. There’s not enough studies on it but he suggested I don’t take it until I’m walking at least 150 feet and off my blood thinner. Because I’m not moving around enough like a normal person so a blood thinner is given. I don’t think it will cause anything to happen by taking it. However I’m not going to take the risk and take the metabolism booster for now. I’m just going to stick to the Isagenix shakes and cleanse. The doctor gave me some information to look at.

My GBS Recovery & Isagenix Shakes

I’ve come a long way in my recovery from Guillain Barre Syndrome to have any additional complications. The Isagenix shakes will help with muscle gain which is what I’m looking for by providing my body the proper nutrients it needs. I’m confident that Isagenix will help with my recovery from GBS. I’ve used it before and in my opinion it increased my overall energy while losing weight and building muscle.

With Guillain Barre Syndrome I’m willing to try anything if it can possibly help me improve and get better quicker. Muscle weakness is a big part of Guillain Barre Syndrome at the start when it begins and even during recovery. I’ve looked into possibly doing steroid treatments before. However the doctors here and my neurologist are not on board with it and against it. I’ve also looked into taking B12 supplements as it’s known to help with nerve repair. They don’t want to give me any additional supplements. It’s within normal range which is the reason I am doing Isagenix now. I want to try and give myself the best chance at recovery. I feel that this is going to help me immensely as I’ve used these Isagenix products before.

Only time will tell so until then it’s Physiotherapy, Occupational therapy and Isagenix shakes for me as I work towards recovering from Guillain Barre Syndrome.

Well who would’ve known putting on your own shirt after GBS would be so hard. Occupational therapy has been want me to learn how to do it with what movement I have. For something so easy to do before Guillain Barre Syndrome it is now a difficult task. This is the part of therapy that can be frustrating. How do you put on a shirt when you can’t grab something with your fingers and you can’t lift your wrists up against gravity and they just hang? I know this is just one part of the therapy and part of this whole journey but it can be a little frustrating.I know I’ll manage and I’ll do it as I’ve always been able to figure out ways around issues.

Sure enough after trying several times throughout the week, I did it. I can now put on my own shirt. At first it was hard trying to get it done but after several attempts I was able to do it. I’m getting more movement and flexibility in my arms and I’m now able pull the shirt over my head. This was the issue before but now I’m able to do it. My occupational therapist is already after me try my pants and shorts next. I just wish I had the full use of my hands, fingers and wrists. I know I’ll manage but it will just be one harder task for me to do. Basically I have to learn how to do everything all over again and to live independently.

Everything I’ve done to this point was to restrengthen muscles, regain motions in my arms, legs, hands, now the next phase is preparing a person for discharge. Learning to do everything on my own again with what mobility I have now. My discharge date as of now is April 10, 2020. This part of occupational therapy is frustrating for the patient but a very rewarding feeling for the therapists. Helping a person get their life back can be a great feeling I’m sure.

I’m looking forward to getting back home, getting back to life but a little scary too. It will be mostly me when I go home and I have to manage on my own. I know I’ll probably have a support care worker with me a few hours a day like previous GBS patients have had. This will help some but I need to learn to care for myself. The next month or so will be interesting, frustrating and exciting all at the same time as I try and hit that date for me to go back home. Only time will tell and one day at a time.

We live our lives and we often take things for granted until there gone, then it’s an eye opener. Think about it for a moment…. Putting on a T-shirt, opening a door, opening a container, cooking, washing, going to the washroom, brushing your teeth, feeding yourself etc.. when you have no strength in your hands and not much use with them as of now. Mind you I’m doing some of these things now but you gain a whole new level of respect for life going through something like Guillain Barre Syndrome.

Next time you do something, all the things in a run of a day that you do, think about how difficult things would be. Enjoy life and be thankful everyday for what you have. 🙂 Nothing is guaranteed in life and things can change in an instant. Doesn’t matter how careful you are, how healthy you are, sometimes things just happen out of nowhere, I know. Live life, enjoy everything about life but most importantly respect what you have everyday. 🙂 Tomorrow is not guaranteed.

Day 200 as of today since this all began for me on August 1, 2019 with my recovery from Guillain Barre Syndrome, the day my life changed instantly. It’s crazy thinking about it. It’s been a long time… I’ve come a long way since being completely paralyzed head to toe. Thankful for all the progress I’ve made. Hoping my progress continues and I’ll be able to go back home April 10, 2020. That’s my discharge date as of now buy they always re-evaluate things so that can change. I’m going to work my butt off to hit that date or sooner. Even when I leave here I have many more months of rehab ahead but at least I’ll be home.

Guillain Barre Syndrome Recovery

It’s been a long time, and still a long road ahead but I’m continuing to get stronger. I’m feeding myself now, finally. My arms are getting better, more strength and endurance. My shoulders are strong and I’m wheeling myself in wheelchair all day which is building muscles and contributing to my arm strength. I still can’t grab anything with my fingers but there moving and coming so signal is getting there. My legs continue to get stronger and within the next 3 weeks or so they think I’ll be using the SteadyMate Walker. Things are coming a long but with Guillain Barre Syndrome recovery is slow but I’m getting better and that’s all that matters. Hopefully in the next 2 months I’ll be home, we’ll see but that sure would be nice. 🙂

I’m starting to see the finish line to reach home. Wish me luck! I’ll beat Guillain Barre Syndrome.

Well today was the day we’re making pizzas in Occupational Therapy, a Valentine’s Day treat. My occupational therapist has been wanting to do this for a little while now. There was no way I was getting out of it, lol. It’s those daily tasks I need to learn to do with what movement I have now till more come back and strength. I knew it would be difficult but knew she’d be dipping into her treasure chest of tools, lol. She pulled all these different straps and knives, lol. I told her, “You definitely didn’t buy those at Walmart, lol.”

Making Pizzas Occupational Therapy

It didn’t turn out to bad. I definitely didn’t cut the mushrooms like I normally do. I chopped them instead of nice slices but you do what you can do. It was hard when you don’t have grip, hands not really working or wrists. No strength either. But I managed. Squeezing the pizza sauce was another hard task but I did it, slow but did it. Since I don’t have the ability to pick up the ham, pepperoni and salami slices with my fingers I had to use a fork.

After we made the pizzas and waiting for them to cook in the oven, I had a delicious Valentine’s Day cookie she made. She was a bit nervous when I went to pick up my glass of milk to bring to my mouth as she went, “oh ohhhh ohhhh…” I was like, “Don’t make me laugh or I’m going to spill it for sure, lol.” It was close, as it tilted, as it’s hard for me to pick up a cup with my weak hands and arms while sitting straight up in a chair. I managed though but I have to admit it was a close call, lol.

The pizzas were done and they looked pretty good. Hers better then mine for sure. I had it for supper and it was delicious really. It’s the first thing I helped make for supper since becoming ill with Guillain Barre Syndrome back on August 1, 2019. I know I can’t wait to be able to go back home and make some of my own meals someday. I miss making some things, but in time I will again.

For Valentine’s Day I gave the nurses some chocolates as a thank you. They do a lot for everyone here. Every woman loves chocolates. 🙂 Now they can enjoy them on their break. They deserve it for everything they do. Happy Valentine’s Day everyone!

With the latest issues with CPP Disability and the lack of government support I started a Jamie Boyle GBS Fundraiser 50/50 board on Facebook. With no income coming in at all I have no choice but to try this as I don’t know what I’m going to do. This will help to cover some bills. I haven’t worked since the end of July 2019 and it’s been tough. Guillain Barre Syndrome and the Financial Stress That Comes With It is an added worry that a person doesn’t need during their recovery. The government let me down on several occasions now, for a system we paid into, it’s just not right.

Jamie Boyle GBS Fundraiser

50/50 Board
$10 per square
$500 to the winner in Canadian dollars by etransfer
Payment can be sent by etransfer to jamieboyle1000@yahoo.ca
The winner will be notified by email or Facebook message as well as on this post.
Get your numbers early before there gone. 😉
Proceeds will be used to help cover bills.
Thanks in advance for your support!

Please help and show your support.
Thank you!

You can follow my Facebook page Jamie Boyle Fight With Guillain Barre Syndrome – GBS to follow the 50/50 board board and more.

You can also show your support by donating to the Jamie Boyle GoFundMe to help beat Guillain Barre Syndrome. No donation is too small, every bit helps. Thank you!

Well today I learned about the frustrating part of occupational therapy. Working out in Physiotherapy such as your arms, your legs, okay but trying to do everyday real life tasks is a whole other set of challenges. My occupational therapist has been slowly adding new things to try. No more just stretching my arms, no more hand and finger stretching exercises, were now trying real life tasks. Things just got a tiny bit more frustrating.

Last week she warned me saying that I’m going to try taking my shirt off and putting it on. That day came and I was like how am I supposed to do that. How do you do something when your wrists don’t work, you have no strength in hands and you can’t grab anything. Your fingers don’t move much either, how? This part I was honest on, this is frustrating, I couldn’t do it. This is one part of occupational therapy that can be very frustrating but something I need to learn to do.

Today when I went to my session I seen cones, a peanut butter container, a small basketball, a glass jar, and a heavy cup. Renee’s never ending treasure chest of surprises, lol. I was like what do you want me to do with that as she places the peanut butter container in front of me, lol. She laughed, “open it.”

When people don’t have use of their full hands, wrists, fingers and just plain grip strength you don’t realize how hard things can be. Something so easy you used to do is now extremely hard or impossible. She had to loosen it as I couldn’t open it. Even then it was hard as I have no grasp or strength. The heavy cup I could pick up with both hands more squeezing not grabbing. For the cones that was another one that was a challenge. You can’t grab with one hand to pick it up if you can’t squeeze it to grab it. My hands, fingers and wrists are just not there to do these things.

Occupational therapy is frustrating. I joke with her about it but I’m going to do what I need to do to get home. It’s all in good fun joking back and forth but these simple tasks can be frustrating for sure. A person doesn’t realize the things we take for granted until there gone and need help for almost everything you do. She joked later saying we’re going to make pizza this week, lol I love pizza, but how?

I’m really hoping my fingers, hands and wrists start coming back quicker. Until then I see many more frustrating occupational therapy sessions ahead. I need to learn how to do everyday tasks with what movement I do have now. Guillain Barre Syndrome brought a lot more frustration now. I’m fine with a challenge, doesn’t mean I have to like it but I’m going to continue fighting my way forward towards my recovery and getting myself back home.