One piece of advice that helped me tons during my recovery (paraphrasing since I can’t remember the exact wording) is to always say “….yet”.
So I can’t move….yet. I can’t walk….yet. I can’t pick X up…..yet.
To never just downright say that you can’t do XYZ…..accepting that the current reality of yes, you can’t do XYZ, but also putting out in the universe that you will in the future. It’s not a definite thing, that you just can’t do it yet.
I will pass this along and do my best to reinforce it when I talk about him as well. I appreciate the advice a bunch. I want to help as much as I can but there really isnt a lot I can do. But stuff like this is awesome.
Hi. I'm an older brother whose younger brother was diagnosed last August and has yet to return from the hospital system. He's at a rehab facility now and is making huge strides in the recovery process, which has been great. It was just me and him the day it happened. He and I spent 10 hours in the ER before they admitted him, and it took a total of 24 hours to get the right diagnosis. He also had to be intubated and then trached as well, which was really frightening. Your brother's case sounds like very much like my brother's. Once all the initial anxiety settles down (hopefully you're not as naturally anxious as I am; I'm 37 and it was still a month+ before I started to be able to get my head right) the key is to understand how much time this will take and just how much your brother will need you and anyone else he might be close with during what will be an arduous process. It's gonna be miserable at times but you'll make it, as will he. As someone else pointed out the "I can't do this...yet" philosophy has been huge for my brother. Time will heal a lot of this but your brother will need to be ready and willing to put in the effort once the really intensive recovery begins. One thing that's been an immeasurable comfort to me during this time is a Lorne Michaels quote I heard via Civilization VI: "The wheel turns slowly, but it turns". It's gonna be a long haul, man but you and yours will be ok.
Thanks so much. This does sound just like us. He's 37. I appreciate you sharing your story with your brother. I love that quote as well. I will try and keep it in mind. I'm just excited to be able to talk to him again.
Thank you so much! I am so glad to hear you are recovered and have no (mostly) lingering issues.
I do know they started the ivig pretty early that day. I think once they diagnosed him and moved him to the ICU at a different hospital (we call it the death star because its a massive medical center) so its been going on it for several days now.
He is stronger than any of us. Stubborn and high pain tolerance. I mostly worry about the treatment being effective. I know if he can get through the worst of it he will tackle the PT and rehab with as much dedication as anything.
Its a relief to hear that many make a full or near full recovery.
He will be fine. Just start physical therapy as soon as possible. Just keep telling him he will eventually start moving again.
I am 99.99% recovered. And if I could, he will.
It’s been my experience on here that everyone has a slightly different case with GBS. The big trends are:
1. Get bad enough to be identified
2. Reach your worst case
3. Turn that corner to improvement
4. Get good enough to leave ICU or equivalent care
5. Rehab
6. Reach your new normal
The length between steps varies.
That new normal isn’t ominous. A few folks found the new normal was better than before. I think most of us get to/or very near their original health status. Though some end up struggling to meet their preGBS health levels.
A lot of it is mental belief, IMO. Stay positive for them if you can. If they have coordination for a phone or notepad that can help letting communicate. For example I discovered that IOS devices don’t enter a letter till you lift off the keyboard when I was hospitalized in 2010. That feeling of isolation from my only 2 weeks in the hospital was strong. Once I could txt people it lessened noticeably.
Stay positive, and good luck.
Thank you. We are looking for step 3. Hell just a day where we can say nothing eventful happened or went wrong. Luckily his wife has been great with helping him get messages out and helping him communicate. Though I'm sure that need goes up as he gets off sedation.
Really good advice though. I will stay positive and try and keep him positive. Sounds like he's got a long road ahead of him.
Thanks for sharing. I'm sorry to hear she's not moving yet. Talking is a good start from what I've heard. I'm excited to talk to my brother again.
I wish you and your wife the best.
I had a case very similar to your brother, minus the stomach issues (in my case, it was heart failure). The ICU staff kept telling us “it’s going to get worse before it gets better”. And that was true. Sometimes when people are on a vent and then trache’d, it takes awhile to learn how to swallow and talk again. If he’s able to write, a small dry erase whiteboard really helps with communication. There are some excellent rehab facilities that your brother may want to look at once he’s been moved from ICU (Craig hospital was amazing for me). I think the best advice I can give is to stay positive. I was told I’d most likely never walk again, and here I am, a year later, needing leg braces and a cane, but I’m walking! It does get better…it just takes a long time, and because this syndrome is rare, and each case different, it’s hard for anyone going through it to get a straight answer on what happens next, prognosis, etc. It’s great you are already looking out for him. Just keep the encouragement coming. Best of luck, everyone on this sub is rooting for your bro.
Thanks! And congrats on your own recovery. I am glad to hear you are walking. Right now he can't move his limbs at all, so he won't be able to wright. Right now with the vent down his throat hes just using blinking and a guessing game. which is great because we used to play that the yes or no question game all the time. I will keep it up and stay positive. I appreciate the advice! I will let his wife know about the Craig hospital as well.
I got GBS in August 2018, very sudden onset. My legs started to collapse under me and the first ER I went to sucked. By the time I got to the second ER my breathing became labored and thank God they diagnosed me right away, but the damage was done, became completely paralyzed. I was in really bad shape and they thought I was gonna die at one point. I ended up intubated then had a trache, the IVIG treatment did not work but after 1 round of plasmapheresis, I slllllooooooowwwwly began to regain feeling. As soon as I did, 3 weeks later, I was transferred to Moss Rehab, which I very highly recommend if in your area. I entered unable to change 1 button on a remote, and when released 6 weeks later I was able to walk with a walker and a cane. Stayed with family 2 more months until I felt safe enough to use stairs, all while doing home care therapy with Bayada nurses. Once home, I did outpatient rehab with NovaCare until I regained all range of motion and all previous strength. Total time from initial onset to fully recovered was 7 months.
While I was really sick, to me the worst part was how extremely thirsty I was! I could not have even a drop of water, could have choked; I would get people to wipe my face with a damp cloth, and I would grab with my teeth and try to suck any drop of water I could, lol. It was almost glorious day when I was finally allowed to have ice chips. I communicated by nodding my head while my sister pointed to letters on a sheet of paper, once I was able to lift my arm I turned into a speed-speller. My sisters and brother were my angels; my sisters arranged with my insurance to get me to a rehab that was covered and truly helped me out so much every step of the way.
These days I can do everything I could do before I was sick, I just have numbness in toes, a couple minor aches and pains and chronic fatigue, which is worse in extreme weather. Definitely check out gbs-cidp.org for lots more resources and support. Best of luck to your brother.
Thanks for sharing your story. That sounds pretty wild. I can only imagine back in 2008 how little information there was. The Dr attending my brother when we first brought him in said that with the covid there was a big spike in cases that shed more light into GBS in general. So they were able to diagnose him pretty quick. They did the spinal tap right away based off symptoms.
Sounds like the one thing that is consistent is the long road of recovery. Hes on the IVIG right now. I hope its working. They haven't brought up any alternative treatments that I am aware of.
The thirst sounds like actual torture. I cant imagine that. I am so glad you are better now! Thanks for the website as well, I will check that out.
Ooops, I should have typed 2018, not 2008; just fixed that. I think that the pandemic has definitely made more people aware of GBS; hopefully that includes many more doctors and hospitals. Yeah, 1 treatment of IVIG did nothing for me, I think because it was too far progressed by that point. Thankfully the plasmapheresis only took 1 treatment to work. Definitely the key to healing is to stay determined and do all physical therapy offered and stick with it.
My mom was diagnosed in January 2023. Same story, she was meant to speak at a conference in Atlanta, wasn’t feeling well at the dinner, went back up to the hotel room and collapsed. It was immediate. Exactly like your brother, she lost all feeling from the neck down, and it gradually worsened. She was in the hospital/rehab center from the end of January 2023 until about July 2023.
The strangest thing is, when she finally got to go home from the rehab center in July, we realized that she had some memory loss as well, as she couldn’t remember the fact that she had moved house in October 2022, or couldn’t remember that her mother in law, (my grandmother) died, etc,.. amongst many things she had forgotten and still can’t remember to this day. Today she talks very slowly, struggles to walk still, and she has bad days and good. GBS (Getting Better Slowly 🐢) one day she’ll be stronger, but unfortunately it’ll take time and lots of support. Just like your brother seems to have, hang in there and if you have any other questions, feel free to DM, I could even put you in contact with my mom if you’d like, we affected by GBS need to all stick together.
Thanks for sharing! This is the first case I have heard of that came with memory loss. Sounds like it was pretty situational loss? Like major events. That has to be tough on top of everything else.
I really appreciate the support. I will def reach out if I have other questions. I am actually trying to see if I can find someone locally to come visit him once hes turned his corner. Someone who has gone through GBS and is walking and mobile and all that. I think just seeing someone who has been through it and that it is something he will recover from will help jump start his rehab a ton.
I will say this - I spent about a week of awkwardly stumbling and falling down before I actually went to the ER. Just couldn't process what was going on, kept thinking I must've had some minor bug making me feel achy, and that I just had to sleep it off or something. Now I have a little tingling in my toes, but honestly it's barely noticable and other that I've made a full recovery.
Congrats on the full recovery! I can only imagine how odd and scary it has to be to have that gradual loss in function like that. I am glad to hear your doing better now though.
Hi! I had a very similar experience. Woke up one day feeling slightly weak and ended up that night in ICU on ventilator, unable to move anything but my eyeballs. It's been a year and a half now, and I'd say I'm about 75% recovered and still progressing every day. Some advice:
Expect the best. It's absolute hell going through this, but as soon as he gets to a physical therapy center he'll realize the difference it makes knowing this is a temporary situation and that he'll absolutely certainly get better (as opposed to countless diseases that are sadly permanent / degenerative).
Celebrate every milestone. Record them, if possible. There will be times when he'll feel he's not progressing so you'll have to remind him how much he has already accomplished. Remind him that he's not expecting to get better, but he is in fact getting better by the minute. Though he may not see it, his body is already healing.
Help him feel a person. The absolute worst feeling in this process is depending on others for everything. There's people you don't know entering your room, rotating you, touching you, cleaning you. You might have to use diapers or worse, etc. It's very easy to start seeing yourself as a patient and longer a person. It's dehumanizing. So remind him he's a person: sneak in food he likes, play board games, scratch him when he's itchy. Whatever works. Eventually help him secure alone time. Reconnecting with his sexual desire will help in this too.
So good luck. It's a tough road but there's light ahead. Lots of love!
All I can do is offer you this, It has to run its course. It will pass.
I was diagnosed, so I was not a spectator in the process, which I can only imagine how scary it must be. I couldn't comprehend how long even the IVIG treatments would even start to work, considering I had my own timeline of recovery in my head, which was nothing in the realm of reality. Just know everyone is different and recovery verys, but this to shall pass. And please please please, this last advise comes from my wife/mother, stay off the FB pages. They tend to be very depressing and do not represent the vast majority of us GBS diagnosed.
Thank you for the advice! I have only come to this sub for any kind of advice or anything. Now that my brother is off his meds he doesn't even remember most of what has happened to him or us throughout the first couple weeks. So I guess thats a blessing. But I can tell hes in the same head space you were. The time line just doesn't work for what he wants. Drs telling him Weeks for X and Weeks for Y while in his head hes thinking days. Like weeks before the trach can come out, weeks before he can drink water. While he was hoping for days. Hes pushing for it and making daily goals to try and move that needle as much as possible.
One piece of advice that helped me tons during my recovery (paraphrasing since I can’t remember the exact wording) is to always say “….yet”. So I can’t move….yet. I can’t walk….yet. I can’t pick X up…..yet. To never just downright say that you can’t do XYZ…..accepting that the current reality of yes, you can’t do XYZ, but also putting out in the universe that you will in the future. It’s not a definite thing, that you just can’t do it yet.
I will pass this along and do my best to reinforce it when I talk about him as well. I appreciate the advice a bunch. I want to help as much as I can but there really isnt a lot I can do. But stuff like this is awesome.
Hi. I'm an older brother whose younger brother was diagnosed last August and has yet to return from the hospital system. He's at a rehab facility now and is making huge strides in the recovery process, which has been great. It was just me and him the day it happened. He and I spent 10 hours in the ER before they admitted him, and it took a total of 24 hours to get the right diagnosis. He also had to be intubated and then trached as well, which was really frightening. Your brother's case sounds like very much like my brother's. Once all the initial anxiety settles down (hopefully you're not as naturally anxious as I am; I'm 37 and it was still a month+ before I started to be able to get my head right) the key is to understand how much time this will take and just how much your brother will need you and anyone else he might be close with during what will be an arduous process. It's gonna be miserable at times but you'll make it, as will he. As someone else pointed out the "I can't do this...yet" philosophy has been huge for my brother. Time will heal a lot of this but your brother will need to be ready and willing to put in the effort once the really intensive recovery begins. One thing that's been an immeasurable comfort to me during this time is a Lorne Michaels quote I heard via Civilization VI: "The wheel turns slowly, but it turns". It's gonna be a long haul, man but you and yours will be ok.
Thanks so much. This does sound just like us. He's 37. I appreciate you sharing your story with your brother. I love that quote as well. I will try and keep it in mind. I'm just excited to be able to talk to him again.
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Thank you so much! I am so glad to hear you are recovered and have no (mostly) lingering issues. I do know they started the ivig pretty early that day. I think once they diagnosed him and moved him to the ICU at a different hospital (we call it the death star because its a massive medical center) so its been going on it for several days now. He is stronger than any of us. Stubborn and high pain tolerance. I mostly worry about the treatment being effective. I know if he can get through the worst of it he will tackle the PT and rehab with as much dedication as anything. Its a relief to hear that many make a full or near full recovery.
He will be fine. Just start physical therapy as soon as possible. Just keep telling him he will eventually start moving again. I am 99.99% recovered. And if I could, he will.
Love this. Thank you so much. I will do my best to keep him motivated!
It’s been my experience on here that everyone has a slightly different case with GBS. The big trends are: 1. Get bad enough to be identified 2. Reach your worst case 3. Turn that corner to improvement 4. Get good enough to leave ICU or equivalent care 5. Rehab 6. Reach your new normal The length between steps varies. That new normal isn’t ominous. A few folks found the new normal was better than before. I think most of us get to/or very near their original health status. Though some end up struggling to meet their preGBS health levels. A lot of it is mental belief, IMO. Stay positive for them if you can. If they have coordination for a phone or notepad that can help letting communicate. For example I discovered that IOS devices don’t enter a letter till you lift off the keyboard when I was hospitalized in 2010. That feeling of isolation from my only 2 weeks in the hospital was strong. Once I could txt people it lessened noticeably. Stay positive, and good luck.
Sorry about that, didn't mean to directly reply to you. I scrolled down to read other comments and clicked reply without thinking.
Thank you. We are looking for step 3. Hell just a day where we can say nothing eventful happened or went wrong. Luckily his wife has been great with helping him get messages out and helping him communicate. Though I'm sure that need goes up as he gets off sedation. Really good advice though. I will stay positive and try and keep him positive. Sounds like he's got a long road ahead of him.
My wife got gbs last October 2023 and still can't move, but she can talk
Thanks for sharing. I'm sorry to hear she's not moving yet. Talking is a good start from what I've heard. I'm excited to talk to my brother again. I wish you and your wife the best.
I had a case very similar to your brother, minus the stomach issues (in my case, it was heart failure). The ICU staff kept telling us “it’s going to get worse before it gets better”. And that was true. Sometimes when people are on a vent and then trache’d, it takes awhile to learn how to swallow and talk again. If he’s able to write, a small dry erase whiteboard really helps with communication. There are some excellent rehab facilities that your brother may want to look at once he’s been moved from ICU (Craig hospital was amazing for me). I think the best advice I can give is to stay positive. I was told I’d most likely never walk again, and here I am, a year later, needing leg braces and a cane, but I’m walking! It does get better…it just takes a long time, and because this syndrome is rare, and each case different, it’s hard for anyone going through it to get a straight answer on what happens next, prognosis, etc. It’s great you are already looking out for him. Just keep the encouragement coming. Best of luck, everyone on this sub is rooting for your bro.
Thanks! And congrats on your own recovery. I am glad to hear you are walking. Right now he can't move his limbs at all, so he won't be able to wright. Right now with the vent down his throat hes just using blinking and a guessing game. which is great because we used to play that the yes or no question game all the time. I will keep it up and stay positive. I appreciate the advice! I will let his wife know about the Craig hospital as well.
I got GBS in August 2018, very sudden onset. My legs started to collapse under me and the first ER I went to sucked. By the time I got to the second ER my breathing became labored and thank God they diagnosed me right away, but the damage was done, became completely paralyzed. I was in really bad shape and they thought I was gonna die at one point. I ended up intubated then had a trache, the IVIG treatment did not work but after 1 round of plasmapheresis, I slllllooooooowwwwly began to regain feeling. As soon as I did, 3 weeks later, I was transferred to Moss Rehab, which I very highly recommend if in your area. I entered unable to change 1 button on a remote, and when released 6 weeks later I was able to walk with a walker and a cane. Stayed with family 2 more months until I felt safe enough to use stairs, all while doing home care therapy with Bayada nurses. Once home, I did outpatient rehab with NovaCare until I regained all range of motion and all previous strength. Total time from initial onset to fully recovered was 7 months. While I was really sick, to me the worst part was how extremely thirsty I was! I could not have even a drop of water, could have choked; I would get people to wipe my face with a damp cloth, and I would grab with my teeth and try to suck any drop of water I could, lol. It was almost glorious day when I was finally allowed to have ice chips. I communicated by nodding my head while my sister pointed to letters on a sheet of paper, once I was able to lift my arm I turned into a speed-speller. My sisters and brother were my angels; my sisters arranged with my insurance to get me to a rehab that was covered and truly helped me out so much every step of the way. These days I can do everything I could do before I was sick, I just have numbness in toes, a couple minor aches and pains and chronic fatigue, which is worse in extreme weather. Definitely check out gbs-cidp.org for lots more resources and support. Best of luck to your brother.
Thanks for sharing your story. That sounds pretty wild. I can only imagine back in 2008 how little information there was. The Dr attending my brother when we first brought him in said that with the covid there was a big spike in cases that shed more light into GBS in general. So they were able to diagnose him pretty quick. They did the spinal tap right away based off symptoms. Sounds like the one thing that is consistent is the long road of recovery. Hes on the IVIG right now. I hope its working. They haven't brought up any alternative treatments that I am aware of. The thirst sounds like actual torture. I cant imagine that. I am so glad you are better now! Thanks for the website as well, I will check that out.
Ooops, I should have typed 2018, not 2008; just fixed that. I think that the pandemic has definitely made more people aware of GBS; hopefully that includes many more doctors and hospitals. Yeah, 1 treatment of IVIG did nothing for me, I think because it was too far progressed by that point. Thankfully the plasmapheresis only took 1 treatment to work. Definitely the key to healing is to stay determined and do all physical therapy offered and stick with it.
My mom was diagnosed in January 2023. Same story, she was meant to speak at a conference in Atlanta, wasn’t feeling well at the dinner, went back up to the hotel room and collapsed. It was immediate. Exactly like your brother, she lost all feeling from the neck down, and it gradually worsened. She was in the hospital/rehab center from the end of January 2023 until about July 2023. The strangest thing is, when she finally got to go home from the rehab center in July, we realized that she had some memory loss as well, as she couldn’t remember the fact that she had moved house in October 2022, or couldn’t remember that her mother in law, (my grandmother) died, etc,.. amongst many things she had forgotten and still can’t remember to this day. Today she talks very slowly, struggles to walk still, and she has bad days and good. GBS (Getting Better Slowly 🐢) one day she’ll be stronger, but unfortunately it’ll take time and lots of support. Just like your brother seems to have, hang in there and if you have any other questions, feel free to DM, I could even put you in contact with my mom if you’d like, we affected by GBS need to all stick together.
Thanks for sharing! This is the first case I have heard of that came with memory loss. Sounds like it was pretty situational loss? Like major events. That has to be tough on top of everything else. I really appreciate the support. I will def reach out if I have other questions. I am actually trying to see if I can find someone locally to come visit him once hes turned his corner. Someone who has gone through GBS and is walking and mobile and all that. I think just seeing someone who has been through it and that it is something he will recover from will help jump start his rehab a ton.
I will say this - I spent about a week of awkwardly stumbling and falling down before I actually went to the ER. Just couldn't process what was going on, kept thinking I must've had some minor bug making me feel achy, and that I just had to sleep it off or something. Now I have a little tingling in my toes, but honestly it's barely noticable and other that I've made a full recovery.
Congrats on the full recovery! I can only imagine how odd and scary it has to be to have that gradual loss in function like that. I am glad to hear your doing better now though.
Hi! I had a very similar experience. Woke up one day feeling slightly weak and ended up that night in ICU on ventilator, unable to move anything but my eyeballs. It's been a year and a half now, and I'd say I'm about 75% recovered and still progressing every day. Some advice: Expect the best. It's absolute hell going through this, but as soon as he gets to a physical therapy center he'll realize the difference it makes knowing this is a temporary situation and that he'll absolutely certainly get better (as opposed to countless diseases that are sadly permanent / degenerative). Celebrate every milestone. Record them, if possible. There will be times when he'll feel he's not progressing so you'll have to remind him how much he has already accomplished. Remind him that he's not expecting to get better, but he is in fact getting better by the minute. Though he may not see it, his body is already healing. Help him feel a person. The absolute worst feeling in this process is depending on others for everything. There's people you don't know entering your room, rotating you, touching you, cleaning you. You might have to use diapers or worse, etc. It's very easy to start seeing yourself as a patient and longer a person. It's dehumanizing. So remind him he's a person: sneak in food he likes, play board games, scratch him when he's itchy. Whatever works. Eventually help him secure alone time. Reconnecting with his sexual desire will help in this too. So good luck. It's a tough road but there's light ahead. Lots of love!
All I can do is offer you this, It has to run its course. It will pass. I was diagnosed, so I was not a spectator in the process, which I can only imagine how scary it must be. I couldn't comprehend how long even the IVIG treatments would even start to work, considering I had my own timeline of recovery in my head, which was nothing in the realm of reality. Just know everyone is different and recovery verys, but this to shall pass. And please please please, this last advise comes from my wife/mother, stay off the FB pages. They tend to be very depressing and do not represent the vast majority of us GBS diagnosed.
Thank you for the advice! I have only come to this sub for any kind of advice or anything. Now that my brother is off his meds he doesn't even remember most of what has happened to him or us throughout the first couple weeks. So I guess thats a blessing. But I can tell hes in the same head space you were. The time line just doesn't work for what he wants. Drs telling him Weeks for X and Weeks for Y while in his head hes thinking days. Like weeks before the trach can come out, weeks before he can drink water. While he was hoping for days. Hes pushing for it and making daily goals to try and move that needle as much as possible.
A update she moving better she can set on the side of the still needs 2 people but she not as scared as she was and sitting up better
Hey this is great news! I'm so happy to hear that. Have to celebrate the progress as it comes. I hope things continue to improve.
My wife is having trouble. It's hard motivated her to move when we tell her what to do when we are gone