Congratulations goes to Jason Holmden of EKA Spray Foam Insulation in Moncton.You had #57 and your the lucky winner of $500. Congratulations!!!
Thanks for playing and supporting the Jamie Boyle GBS Fundraiser 50/50 Board on Facebook.
Thanks to everyone for playing! Your support was also greatly appreciated. I’ll probably do another 50/50 board here again. Thank you!!! 🙂
Today my physiotherapist’s contact came in to try a DonJoy X-Act Rom Knee Brace fitting on me to help provide me with walking support towards my recovery from Guillain Barre Syndrome and help me towards walking. Our thought is that this type of knee brace will help prevent my knee from buckling. Usually every session walking between the parallel bars my knee buckles two times. Yesterday it didn’t buckle once. Hoping this knee brace will give me the extra support and extra level of protection to get me to my next stage of walking. My physiotherapist wants me in the SteadyMate Walker but needs my knee a bit stronger or some level of protection for safety reasons to prevent a possible fall. Although I can walk the whole session I know I’m not confident my knees won’t buckle on me without having a some type of knee brace on.
With this type of DonJoy knee brace it allows both extension and flexion. My knee needs to be able to move still to further strengthen my knee. There are other types of knee braces out there but they lock once you stand up. You would technically be walking with a straight leg with no bend. This is not what we want. My knee still needs to be able to bend to further develop strength.
These knee braces aren’t cheap. This DonJoy X-Act Rom Knee Brace is about $300. With the amount of walking I’ll be doing, this might not be the right one as it won’t last the wear and tear of the extent of the physio I’ll be doing. My physiotherapist and the DonJoy rep were talking about a custom one being done. These are however expensive at about $1,700. She wanted to try the low end one such as this one as she knows I won’t be in that knee brace too long. This is just the next step to get me to walking outside the parallel bars.
The thing is the custom ones lock once you stand. They are strong but you can’t control the setting for flexion and extension like the one above. They either lock you in a straight leg position once your standing or unlock to be able to bend and sit back down. There is no in between. The custom ones are stronger too and built to last. I mentioned to the rep if perhaps they can customize it further with the dial control added to be able to set for flexion and extension of the knee. I’m not sure if it can be done but that’s what I kind of need. The custom ones are designed more for other types of injuries and not really for Guillain Barre Syndrome patients.
The DonJoy representative is going to come up with a few options for me and quotes. My physiotherapist is going to discuss this further with him to come up with the best knee brace for my current condition. I told them both, come up with the best one possible for me not with cost on the first priority. I said come up with the best one that gives me the best chance at success in recovery. Sometimes for health you can’t make a decision based on something that might cost you a few hundred dollars less. Even though financially that’s a lot given the current situation I’m in but if that’s going to mean the difference between walking or not I’ll gladly pay the extra money. Not sure how but hopefully things work out here soon with CPP Disability and I’ll be getting some income soon.
Now I have to wait till Monday to see what he comes up with. Hoping a knee brace can be provided pretty quick. As I’m anxious to get more walking steps in to help further progress in my recovery from GBS. Now I wait.
I wanted to get a video of me walking wearing these DonJoy X-Act Rom Knee Braces but I forgot. We were all too concentrated on talking about the ideal one for me. I’ll get one next time. It felt okay walking with them, little different, extra weight but it stabilizes you knee. Looking forward to what they come up with for me.
Well today I was shaving my face for the first time since Guillain Barre Syndrome started on August 1, 2019. I’m trying to do as much as I can on my own. I knew I could shave my face just never really tried until today. I’ve been getting stronger in my arms and have more movement and flexibility. For shaving face first time I used a hand cuff, the one I use for brushing my teeth. I ended up using my camera on my Ipad to shave so I could see what I was doing. It worked good.
I’m slowly doing more and more on my own. I’m working towards my discharge and going home. Guillain Barre Syndrome is getting better slowly and that’s what’s going on. One more step in the right direction towards independence.
Well I have to say getting dressed with disabilities is very challenging. This morning was the first time attempting to get dressed on my own since Guillain Barre Syndrome began on August 1, 2019. Let’s put it this way, it was work! I told my occupational therapist yesterday that I wanted to try it on my own this morning. So I did. It was a work out..:) The other day I did the post Who Would Have Known Putting On Your Own Shirt After GBS Would Be So Hard? Well that’s easy compared to putting on your own underwear and shorts!
Well it took me a while but I don’t give up…When there is an obstacle or challenge in front of me I try and try again till I succeed. I started at 9:00am and I didn’t finish till 9:45am. Yes it was frustrating! But I didn’t quit.. You don’t realize how hard it is to do something when you don’t have access to the full use of your hands, fingers and wrists. I can’t grab and pull them up, no squeezing strength. Basically I had to try and squeeze my shorts between two hands and wiggle them up. I can’t wait to get my hands back that’s for sure.
With all this being said, I managed though. There is always a way to get things done. It might not be easy, definitely not quickest but when there’s a will there’s a way. Frustration is a part of Guillain Barre Syndrome. Nothing is easy and you have to work hard for everything.
My occupational therapist knew I would be able to do it. She knows I don’t quit and I won’t stop until I succeed. This morning she joked with me saying she should take the rest of the day off, I’m running my own therapy and I don’t need her help. She laughed and joked and said pants, socks and shoes next… 😆 Again how do you do this with not much hand use at all. Like I said before occupational therapy is frustrating but very much needed to get your life back. One day at a time, one task at a time but it’s all coming together. My hands just need to start picking up the slack.
I’m down 5 lbs and I’m losing weight drinking shakes and also walking more in Physiotherapy. Since last week starting my shakes and I have noticed more energy. I also did 45 minutes walking between the parallel bars today.
Normally I do about 25 minutes without any breaks as it takes time to set me up. I asked the physiotherapist if I could do 1 hr. walking. She was a little hesitant as she didn’t want me to push myself too hard and hurt my knee. I feel great though! We compromised and did 45 minutes and it was totally fine. I could have easily done 1 hr or more.
I really want to increase my walking time to further progress in my recovery from GBS. Walking an hour each day would be great! We’ll see what she says tomorrow. More physio, more walking = greater progress!!! 🙂 I need to get better as fast as my body can as my discharge date will be here before I know it. Sometimes to get the results you want you need to push yourself further. With me losing weight drinking shakes, adding more muscle and walking more in Physiotherapy will definitely help me towards my recovery from Guillain Barre Syndrome. It’s time to go to the next level in my progress! More time walking will definitely help my cause.
Today in occupational therapy I asked if I could use the Hand CPM Machine, a medical device that provides continuous passive motion to fingers. I want to focus more attention to my hands, fingers and wrists. My occupational therapist asked a colleague of hers that’s a hand therapist at the Fredericton Regional Hospital to borrow it a week ago. Last week we tried to use it but the gloves were medium and it did not fit my hands. Today when I asked about it she did get a large pair of gloves and said we could try it if I wanted to. So we did.
The hand CPM machine is not designed to help treat people with nerve damage like Guillain Barre Syndrome but I feel it may help. It’s not going to hurt to try, so why not. By using the CPM machine it will help keep my fingers and joints to stay loose and not so tight by stretching them. My hope is that it will help with my range of motion in my fingers. It’s also my hope that it helps stimulate more signal to my hands and fingers. More movements the better for any body parts while going through GBS. You got to keep your legs, arms, hands, fingers and everything moving. The hand CPM medical device is not going to heal my nerves but I believe I’ll benefit from using it.
I tried it for about 15-20 minutes today and it felt good. I provides both flexion and extension for my fingers. The CPM machine is programmed to what degree or strength you want it set to. I only used it a short time today but it’s also the first time I touched my left thumb to my index finger. I couldn’t do that before. Did it help or will using this machine help me going forward? I think so! I’m looking to use this everyday if I can.
More work and attention is needed on my hands. Hopefully they’ll have the CPM machine here for a while. If not then I asked if I could be referred to a hand therapist at the Fredericton Hospital. I’m not sure on that one if it’s possible but it’s been brought up. I’m all about trying new things like this CPM machine. If it can’t hurt you and has perhaps a chance to help you why not. I’m willing to do anything or try anything if it can improve my recovery from Guillain Barre Syndrome. Thinking outside the box is always good and being open to try things. I’m less then 40 days away from possible discharge and I’m focusing more on areas that need improvement.
It’s a definitely a neat medical device but expensive. This machine here is $13,000… When it comes to medical equipment, disability equipment, basically everything in the health field is super expensive. I’m happy that my occupational therapist thought about this machine a while back for me to try. I’m glad she is open to the idea of me using it everyday to see if it may help me. It would be research to perhaps use on other patients. I was able to touch my left thumb to my index finger so maybe it helped.
We’ll see how things go using it daily going forward. Hoping it helps with improvements in my hands and fingers. Who knows maybe they’ll use this with future Guillain Barre Syndrome patients to help them at The Stan Cassidy Rehabilitation Centre? I’ll be the first test subject. Looking forward to seeing the results going forward from using it.
Research continues to demonstrate that moving a limb or joint aids rehabilitation and leads to better outcomes. By combining active physical therapy along with a Continuous Passive Motion (CPM) device, it is possible to significantly increase joint range of motion.
Well I’ve been thinking a lot lately and hospital rehabilitation discharge planning is stressful. I’m 40 days away from possibly going home and leaving The Stan Cassidy Rehabilitation Centre in Fredericton, NB. The thought of it is exciting but a bit overwhelming too. I’m thinking about everything possible for me to go home. As mentioned before Occupational Therapy is working on all those tasks required for me to do to get me home. I’ve been having more talks with my occupational therapist lately. Talks I don’t like having but have to have.
I know personally I’m not ready to go home now. Will I be ready enough in 40 days from now? I don’t know. I don’t think so but I definitely will try. April 10, 2020 is my current discharge date. I think they will push my date out further when they reassess my progress closer to discharge date. My body, my nerves still have a lot more healing to do from Guillain Barre Syndrome. On top of simply recovering from GBS, planning my home to be ready to go home to, is where the stress is. Lots of things to think about for sure.
The stress comes financially to make my home wheelchair accessible. I haven’t worked since end of July, zero income coming in. No CPP disability, no social assistance, no help from the government. Going through GBS is one thing dealing with all the ridiculous and disappointing issues with CPP Disability and the lack of government assistance is just plain frustrating. How do you prepare your home with no income and the government doesn’t cover? It’s hard, it’s stressful and don’t know how things are going to get done right now. I’m taking things one day at a time as things always have a way to working out in the end.
There are several things I need to do at home before I can come home. Things I’ll need to have someone do for me.
These are just some of the things I’ve thought about that needs done. As my hospital discharge planning continues more stuff will also come up I’m sure. You don’t think of everything as you’re so use to being able to do things before on your own. Where things are in the house, can you reach if not standing on your own and walking? Are you able to do this by yourself? How am I going to get to rehab if I can’t drive yet? So many things to think about.
I’m looking forward to discharge from The Stan Cassidy Rehabilitation Centre but only if I’m ready. I personally don’t think I’ll be ready but we’ll see. Still need to have practice walking independently when I do start and that takes time. I tried the Steadymate Walker on Friday but my knees buckled twice in a half hour. Physiotherapist is saying I’m so close… just need knees a little bit stronger. The plan was this week coming to give it a try so I’ll have to see come Monday.
Looking forward to the next 40 days. It will be stressful for sure figuring how to get home stuff done but the thought of getting some of my life back is a great feeling! I’m not going to be shooting hoops, gardening in my greenhouse or raising chickens and eggs anytime soon. Can’t wait until I do though. I’m not going to be back to myself as I was before but I will in time. I’m taking my life back GBS. Kids I’m coming home soon. Over the next 40 days will determine when.
GoFundMe Help Jamie Boyle Fight
With Guillain Barre Syndrome – GBS
It’s been 7 months as of today since Guillain Barre Syndrome all started on August 1, 2019, day 214. Day 214 now in hospital/rehab! Wow.. It’s been a long journey so far, long journey still ahead but I’m getting better. It’s crazy to think I might possibly be getting discharged from The Stan Cassidy Rehabilitation Centre in 40 days. Exciting and overwhelming at the same time if I’m not ready and my home is not ready and accessible for me. Little stressed….
I look back at some of the pictures at the beginning when I became ill with GBS. I was in bad shape! Paralyzed head to toe and in an induced coma for 10 days. I look at where I am today and it’s amazing the progress I’ve made. Going from being unable to do anything to be able to do what I can today is unbelievable. With Guillain Barre Syndrome recovery is slow,. 7 months is a long time so far and it isn’t over yet. I’m thankful for where I am today and the wonderful nurses, doctors and all staff who helped get me here.
Hoping for great progress within the next 40 days that will help bring me home. Wish me luck! I’m going to need it. 🙂
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.
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.
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.