my experience with guillain barre syndrome (yes, i almost died)
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- Опубликовано: 17 сен 2024
- This was and is still obviously a very tramatic event for me, and I am still in recovery physically, emotionally, and mentally. Please be kind :)
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Being trapped in your body sounds like an absolutely terrifying experience!! I can't imagine how hard that must have been for you! My heart literally warmed up hearing all the kind things the nurses did with you to keep you company! Those small gestures make a BIG difference in such a difficult time like that!
I truly couldn't have done it without my great nurses and therapists!
My youngest daughter was 28 when she was finally diagnosed with Postural Orthostatic Tachycardia Syndrome. (POTS), Ehlers Danlos and Mastosytosis. She had symptoms for 4 years before she was diagnosed. She went to college and trained as a 911 dispatcher. She had just begun her career and her symptoms advanced to the point she had to quit her job and was nearly bed ridden. Like you, she is a fighter and always has a smile on her face. She is now 36 and has a daughter who will be 8 in a few days. She has carved out a life for herself and her daughter despite the pain and other health issues she deals with every day. I am proud of you for handling all your health issues with courage. You are an ambassador.
I was diagnosed at 21 with the same things. I was a firefighter/EMT and had a bachelor’s degree. I spent 3 years struggling to get my life back and am now finishing school to become a physician assistant. Disability is hard but it’s also beautiful
Try Moringa powder. It’s a nutritional issue not medical. That’s why the Dr’s can’t fix it.
@@everlasting1154 for which one
@@lordfarquaad1701 Almost All that aren’t caused by infection.
ruclips.net/video/GIxmRlqv3zQ/видео.html
@@everlasting1154no it’s not?? It’s genetic. THATs why doctors can’t fix it. It’s in our genes 🧬
I’ve nursed patients in inpatient rehab with GB and it’s truly such a cruel disease. As if getting a first virus isn’t bad enough, but having it attack your nervous system is crazy!
And nerve pain is one of the worst kinds of pain you can experience, I don’t care what anyone says
EXACTLY! I had no idea nerve pain was so difficult to deal with :( Thank you so much for all you do!
My grandma unfortunately passed away from guillain barre syndrome because her immune system just wasn’t strong enough to fight it so I appreciate this video because it’s very rare and not many people know about it and it’s nice for you to talk about it and your experience so people can get knowledge about it.
I am so sorry for your loss.
@@aprilminhee thank you 😊
As a medical student, im so so grateful that you could be able and had the will to share your story with everyone, cause this helps me to understand better what are pts going through, and how can I get better at diagnosing and treating my future patients. thank you so so much and im so glad you're going for a good recovery ✨✨✨
Please also learn about CIDP w/cranial nerve involvement which affects my speech, breathing and swallowing. It is considered progressive GBS for lay people. I started w/symptoms in 2008 and it slowly progressed through the years. My primary told me it was anxiety and the first neurologist agreed. After continuing to deteriorate and almost dying for the 2nd time they narrowed it down to CIDP vs Marie Chacot Tooth. They started me on IVIG and by God’s grace I had an excellent response. I now receive it every 3 weeks and am bordering on needing Prednisone. The best way you can be a doctor is to actually listen to your patients and continue to search for answers especially w/an out of the box patient. Don’t poo poo women and blame it on being a woman or anxiety, you’ll learn much more w/o that thought bias. Best of luck!
21 year old recovering currently from Guillian barre. Thank you for sharing this 🙏🏻♥️
I feel for you and hope this video could offer some encouragement! Sending love :)
Me tooo
Did you get this after taking any vaccines?
I had a few patients years ago have this after the flu shot.
It is def a road to recovery. Hope all is well
Try taking moringa powder. What you have is a nutritional deficiency problem. Not medical.
@@everlasting1154 shut the fuck up. You have no idea what you're talking about.
My mom had this:( she went in from feeling sick, at first the doctors didn’t think anything and tried to send her home but she felt off, she went to the hospital and 10 hours later her lung’s collapsed and was on a vent. so glad people are bringing awareness to this. Her feet stayed paralyzed and her hands. She felt numbness 24/7 and was on so many meds. She still managed to have 3 kids and push through for YEARS! She has now passed (from a cold) she had barley any immune system left from this. Hope you’re doing well ❤️❤️❤️ thankful for you
I am so sorry for your loss. YES! GBS needs to be talked about more so that people can recognize possible symptoms and advocate for themselves.
I had GBS when I was 8 years old. My pediatrician diagnosed me from watching me walk into the exam room. He admitted me to the hospital, they did a spinal tap and they moved me to a hospital 25 miles away, so I could get more intensive care. That night my heart stopped and I got incubated, then a trach. This was 58 years ago, so I am very grateful to be alive. There was a long recovery, I remember doing exercises at home, I had a physical therapist that came once a week to teach me new exercises and then I had to do them until she came the next week to give me new ones. I hated the exercises, they hurt so bad! Lol nut I became a nurse because of those experiences. They told me I never would because my hands were too weak from the GBS. I think my career of 24 years proved them wrong! Ty for sharing your story!!
Hello April, I am an OT, and am currently assisting a patient w/ GB syndrome. It is a very emotional experience and sometimes it looks as if we’re not making progress but they have come a long way, and this video has given me hope, I’m so glad that you have recovered and wish you all the best 🙏🏾
OTs are absolute angels! Thank you!
@@aprilminhee 💜💜💜💜
Your job is very valued and patients and their loved ones see you as little gods. Have this in mind and keep doing the good work you are doing with patience and perseverance!
this video made me cry. i’m going to be an ICU nurse very soon, and it’s stories like this that inspire me. your strength and perseverance are beyond admirable. so glad you’re doing well !
Thank you in advance for all the hard work you do 🥹
I work in a MICU as a tech while I’m in nursing school. Stories from patients like you are a reminder that there are real people with feelings behind the patient that we are treating. Thank you so much for sharing your story! I look forward to watching your journey as you continue to recover.
You are so strong! My dad was diagnosed with Guillain barre when i was only 7 days old and he survived too! It makes me so happy to see that you are spreading awareness and you are doing so awesome!
My grandmother got GB twice in her eighties, a few years apart. Now she's walking again! With a walker but she's also almost 90.
Watching her defy her doctor's every expectation taught me that so much of recovery is determination. That whole woman's body seems to be made out of spite.
So I wish you a wonderful recovery, all of the determination and help from other people!
That's absolutely incredible I see many young healthy people have bad outcomes let alone a person in their 80s! It must me a testament to what a strong woman she is with a incredible drive for independence! I'm so glad that she has such a good recovery it's terrifying to go through this one time so I can't imagine having it happening a second time knowing exactly what's going to happen to you ! Hats off to her she's clearly raised incredible kind and compassionate children and grandchildren , i wish you all the best ❤
As a nurse, I appreciate your appreciation! ❤️❤️🇨🇦
You are so incredibly well-spoken; I've never seen anyone like you. Respect for sharing your story and fighting so hard for yourself
This brought tears to my eyes.. thank you!
Thank you very much for sharing this. I am a prospective neurosurgeon and I covered Guillain-Barré for my research project in my neurobiology course. This really helps bring a human perspective that unfortunately we don't have the time to cover in our coursework but is the most important aspect of medicine. You talking about hitting milestones on things like taking a sip of water reminded me of all the times I was told in my neuro class that "You don't realize how bad it is to lose some of these little functions, how much you'd miss them, and how grateful you'd be to have them back". I have a vast amount of respect for you fighting through this, and I hope your story will stick with me for a very long time. All the best and I wish you the greatest deal of strength in your recovery.
You are such a strong woman! I’m a nurse and we were always trained that patients, even if in a coma can often hear everything you say. I don’t know how you did it. But you should be proud of how hard you worked to get here. I don’t know how you held it together to tell your story. I was in tears hearing it. Thank you for sharing it.
I am an OT, the very first patient I saw shadowing pre-OT was a 19 year old girl with GBS. I will never forget her. SO PROUD of you for seeing all you have accomplished as a win, every challenge you face is not a road block but a barrier you just need to modify adapt or overcome, and if you ever need help PLEASE contact your old OTs I am sure they would love to keep helping you. YOU GO GIRL
I appreciate my OTs SO SO much! Without them, I wouldn't have been able to learn how to live my "normal" life again.
What’s an OT?
@@mathildewesendonck7225 occupational therapist :)
What a horrifying experience. You've mentioned a lot of my worst fears. Thank you for sharing your experience; as a healthcare professional this helps give perspective to a condition that we spent very little time on in school, so I hope I can diagnose it quickly if I ever cross paths with it. You are extremely articulate and I'm so glad to see you so far along on the path to recovery! Wishing you strength and luck on your journey, and happy holidays.
I have chronic pain and mobility issues due to hypermobility and nerve problems so it was nice and also a bit relatable watching your video. The disability and chronic illness community has really helped me feel less alone and less of a burden etc, so I’m glad you came on here to tell your story to show others they’re not alone in their pain
My dad had GBS. No one knew what was wrong with him. He stayed in the hospital for 10 days until they diagnosed him with GBS. He was really lucky that he did not have to be on a vent. It was a really hard time for us as a family but my dad fully recovered! He’s still struggling with nerve pain in his legs. We’re really grateful to have him alive and do well ❤️
Saying you are sensitive to vaccines is the same as saying that you are sensitive to arsenic or cyanide. YOU are not the problem in this equation, my dear. The phrase Warp Speed and Vaccine don’t even belong in the same sentence, and for good reason. Proper safety testing takes many years. These things never should have been inflicted upon young, healthy people who had nothing to gain and everything to lose. You guys deserve accountability from the negligent government who was derelict in their duty to public health and you certainly deserve compensation. Because there’s a LOT of people in the vax injured boat. It’s not rare at all like they want you to believe. React19 is a good resource for anyone dealing with vax injury. God help us all, the media needs to stop suppressing the truth.
Wow. I cried through this whole thing. That was horrible to listen to and I cannot even begin to imagine the pain and terror you experienced. I am so sorry but so glad you’re getting better every day! I wish nothing but the best for you.
I was also hospitalized with Covid while in my third trimester of pregnancy so I understand how isolating that part is, but your experience is horrifying.
That sounded all so terrifying. It’s wonderful that you have made such a recovery and that you had great medical support behind you.
Thank you for sharing your story. GBS isn’t well know amongst the medical community, hopefully your video can bring more awareness. Praying for your recovery, sending love and best wishes your way. ❤
It’s know to us
You poor baby! That must have been beyond scary. Looks like you came through it in spectacular fashion. Hugs to you!
I've been roofed before with an unknown drug and have felt paralyzed yet fully conscious. Still to this day, I didn't know what I was roofed with. It's the scariest thing, and am so happy you are in a better place and healthier 💖
I was recommended this video, and glad to see you recovered from the horrible parts; while dealing with this life long syndrome. I’m glad you you’re still alive.
I’m glad you survived! The whole thing sounds terrifying!
thank you for sharing your experience with us and helping bring awareness to GBS. my mom had GBS 10 years ago and tbh recovery was not easy and took quite a while (she had to relearn everything), but she's back and much stronger compared to how she was before. prayers for your full recovery, and to everyone in the comments too 🤍
My dad had this when he was a teenager! His family had to travel from Chili to Canada escaping the civil war while he was paralyzed. He was fine after therapy and everything’s perfect now ❤ good luck in your recovery 🎉
From a stranger to a stranger, I am honestly so proud of you! Wishing you all the best 🙏
I'm a physical therapist working in post-acute neurological rehabilitation and over the past two years of working with patients post COVID I've dealt with many cases of Guillain barre syndrome and I feel so happy seeing you talk about your journey and seeing you speakup and help others like this. Rehabilitation starts somewhere but it's your will to get better and your strength that kept you going and reaching your goal. I feel so happy seeing people on their way to recovery and bless you for making this video. I hope you the best of health and I'm definitely showing you're video to my other patients right.
April, what a story! You have a strong spirit and determination. Wishing you the strongest health. wishes from Kazakhstan!
Yes, be very proud of yourself! I am a registered nurse and understand your journey. You are an inspiration and courageous to share your experience. Blessings.
I’m so glad you’re okay now , it’s terrifying to think about what you’ve gone through 😢
You’re such an articulate, charming person. I am so glad you are recovering. What an incredible experience. Of course you have PTSD! How could you not. But what comes through is how smart, strong, and charismatic you are!
Thank you so much for your kind words! It means so much to me :)
Your strength and willingness to recover is amazing. I’m glad you got the chance to do the things you want by the end of your recovery and after 💪🏼 ❤
You are such a brave girl and thank you for sharing this experience😭😭 it must be so difficult to speak through this, much love!! Take it easy and leave yourself time to heal ❤
What you said about taking a sip of water as your goal made me realise how grateful I ought to be for my health and thoose tiny simple things
The fact that you went through this so recently and have made such an incredible recovery!!!!!
So happy for you to have a support system!!! The internet supports you too!!!! YOU GO GIRL
You are very brave and very strong.
Most people don't understand that nerve pain is extremely difficult to deal with. No other meds work on the nerves. Only specific meds work yet it causes being able to balance difficulty. The meds help, at very high doses help greatly for the excruciating pain.
I know because I have nerve damage in my right lumbar and down my right leg. Without surgical procedures and meds I cannot walk.
I can emphasize with some of the pain you went through. Glad you are doing better.
I hope this video is able to offer some kind of encouragement, and I am so sorry that you are also going through nerve pain.. It is definitely so difficult to explain and deal with!
Neurologists dont treat disease, they admire them. All the props to the nurses, therapists and friends that fight that fight so we can focus on being well :)
Thank you minhee for sharing your dark moments and journey to recovery. I pray for your continuing recovery and for stronger body, mind and spirit. I thank God for His grace and mercy for your journey. Amen!!
You are such a strong woman and you articulate perfectly. I am so proud of what you have accomplished and what you will accomplish. You can do anything that you put your mind to, if you can think it, you can do it.
Hello 👋how’re you doing?
What a beautiful person and so inspiring! I am sorry for all that you endured with this because it sounds very scary .
Your ability to find the best in it , and share your experience I know will help many! ❤
This is very inspiring and I can't even begin to imagine how much courage and strength it took to get through this. Your determination to get through this has really changed my perspective about some things that have happened in my life. You are a trooper 100% and thank you so much for sharing such a tribulating time in your life. You are an awesome person and may I bless you with peaceful recovery. 💖💖💕
when i was a kid, i watched a lot of medical mysteries shows and i remember that gb was one of those illnesses that came up a lot, and how people spent a lot time going from doctor to doctor without getting an answer. honestly, even though it's terrible and they had a hard time diagnosing you, i was honestly relieved when i heard your medical team took your condition seriously from the get go, even if they took a long time figuring out what was happening
I feel like I reliving in those symptoms and pains when I'm watching your video. I was also diagnosed with GBS in Jan 2023. GBS hit me a little faster compared to yours, I was paralyzed within 48hr from the first symptom. and yes you were right, being paralyzed doesn't mean you can feel anything, we feel everything but we just couldn't move. I'm still not fully recover but I'm glad you're doing so well my friend :)
You are extremely mature young lady for your age, I'm sure your battle with Guillain - barré syndrome did help in that as well. I admire your strength and your will to pull through this hard and surely dark times. I'm so happy for you to see how far you came and that you recovered successfully! I'm sure it was scary as heck in the beginning when you didn't know what is going on and loosing the ability to move must have been terrible. I wish you the best for the future and I wish only for the best health down the road!
You are a warrior and an inspiration! You are being catapulted to greatness from this life changing experience I can just see it! God bless you! Thank you for sharing! Keep the videos coming!
Hi 👋 how are you doing?
I’m glad you’re doing so much better. Nurses are truly the best!
Thank you so so much for sharing! It’s so hard to believe for me, someone just sitting on the couch watching tv, I got suggested your video and I’m very interested in health issues. I know you’ve been through a hard time and I don’t know you at all but I’m so proud of you! You did it, and thank you for raising awareness and telling us all what you went through. Sending love ❤
You spent 3 1/2 months in the NICU? You were like enough about that⁉⁉20:04 Girl, you are STRONG! It's hard being in the hospital for 2 DAYS. So don't ever discount your journey. You're amazing. 💙💙
in case anyone was confused (like I was) she was in the NCCU/Neurological Critical Care Unit
@@c_________ we call it the NSICU(neuro sciences intensive care unit) at our hospital so it isn’t confused with NICU,which usually stands for neonatal intensive care!
@c thank you for specifying. NICU means neonatal to me so i was trying to figure this out.
I bet it wasn't easy for you to make this but I know many will find hope and healing through this video . Thank you for sharing.
you are so inspiring for making the best of the illness, congratulations for getting through and rising up 👏👏
Your positive attitude is so so beautiful given all the pain and trauma you've experienced. Huge congratulations for all your recent accomplishments and I hope for only the absolute best in your future ❤❤
I have gastroparesis, small cell fiber neuropathy and mast cell activation syndrome. I also suffer severe panic attacks from so much hospital trauma. A year ago I didn't have these diseases or mental health problems. There are days where I feel like I'm not in my body anymore and like its slowly getting worse. They think my gastroparesis was triggered from getting covid because it wasn't that bad before I had covid. My PTSD is also really bad. And I'm working with my psychiatrist and trauma therapist weekly through it all but it's been rough. I can't even imagine what you went through. I've been in the ICU before but never to your level of it. Hospital trauma is definitely real though and I wish more people understood how scary it is.
We’re strong & we got this!
Thank you so much for having the strength to share!! You are very well spoken, as others have mentioned. I appreciate your outlook - your positivity, fighting sprit, not placing blame on others. I hope you have a speedy rest of your recovery!!!
You are so strong, thank you for sharing your story with the world. Your optimism and strength throughout your unbelievably hard experience is remarkable and awe-inspiring. I hope and pray you will continue to heal fully and not live in pain. So sorry you had to go through such hard moments. Hugs!💕
My heart goes out to you. I cannot imagine how horrible that must have been, to be unable to move or communicate. I am so glad that your nurses helped keep you company and push through. I aspire to work in the medical field and thank you so much for sharing your story. Wishing for your full recovery!
Thank you for sharing and giving a voice to all of us who have dealt with a health crisis. You are an inspiration to never give up.
Hello 👋how are you doing?
I am a medical student and when I studied about gbs last month I cried knowing how patients will suffer through the pain and how mush power and patience they need to have to pass it
I am very proud of you and I really hope your recovery goes smoothly 💜
ITs amazing how far you have recovered! My father had GBS, and I was by his side often in the hospital and recovery. It is no joke such a serious, life altering illness. I loved hearing your story, and I thank you for sharing. No one will ever know how hard you have worked to get to where you are.......It's so amazing! My father has passed away from cancer, but I enjoyed hearing your experience because he was a man of few words, and didn't express all his emotions. I am sure he felt emotionally similar to you. May you continue to spread information about GBS, and help others! I pray that you will continue to be out of pain, as I know that can take time to manage.
I am so so sorry to hear that! Although he didn’t express much, I’m sure he loved having you by his side during recovery. I can vouch that the feeling of support by loved ones is truly indescribable. Thank you so much for your kind words!
Your so strong, keep going! Your fighting spirit and personality Will get you a far way
i'm so freakin proud of you!! I'm seriously so sorry that you had to experience this. I can't imagine what you personally went through, the emotions you endured, the pain, and the mental torture. Thank you for sharing your story with us. Keep going you are awesome!!
Thank you for sharing! I had GBS in 2008 at the age of 29. It definitely is a life changing experience. So glad your in your doing well with your recovery.
You were eloquent, thank you for sharing. Rooting for your success! ❤
You are INCREDIBLE! I pray God gives you an abundance of joy, healing, and prosperity as you continue to radiate your resilience! You have overcome so much! 💕
You described your experience so eloquently. Thank you for sharing your story. Not only does it help get the word out on symptoms to watch for , but it also shows determination and hope can help pull you back to a full recovery. You are such an inspiration and I hope that the last bits of recovery go quickly and smoothly. HUGS!
Wow this video made me bawl mt eyes out. You are so incredibly well spoken and your story is so touching. Im so so glad you made such an amazing recovery!
I'm so glad you are able to do the things you can do once again. You are a strong person! Many prayers to you for your continued recovery...
My 67 year old mom was diagnosed with GB after a scary event. I am so grateful to have been working from home that day. The night before she had mentioned her palms felt tingly but she didn’t want to go to the ER. Within less than 24 hours half of her face was not moving, had double vision, and she could barely walk. I feared it was a stroke and we rushed to the ER as I wasn’t aware of GB considering how rare it is. Thankfully one of the doctors decided to do plasmapheresis and immunoglobulin within the next day or so of her stay at the hospital and spinal tap after seeing her MRI and CT results indicated she did not have a stroke. I think that really saved her life. Things could have been so much worse had we not caught it on time. It took her a couple of months to recover and I’m grateful shes pretty much 100% back to her original strength. Thank you for posting your experience on here. I really hope more people learn about this disorder.
I am a sudden cardiac arrest survivor. Girl we are bad asses!! i spent 4 days in a coma on a vent. I remember learning to walk again and hold my head up and feed myself . All the the things!! Love you and keep on keepin on!!
We are doing so well! We got this :)
I’m so glad to hear about your recovery, Minhee ❤ Sending you so much love and care
Hi 👋how are you doing?
I’m so incredibly proud of you ❤❤
I'm so glad you had such great nurses and doctors! When you said she painted your nails omg 😭 That being said, how incredible that you overcame this! This is probably many peoples' worst nightmare, mentally present but physically completely paralyzed, in pain, and then you didn't see anything either?!?! So much respect to you and the medical professionals, for getting you to the point you're at now, with how far you've come I'm sure you'll continue to recover💐💐
Thank you so much for sharing your story. I felt like I learned a lot and I wish more people knew about GBS too.
Thank you for sharing your story! I am also recovering from GBS and was on a vent. It’s so rare to find others who have been through the same thing.
That’s why I wanted to post this video! To create a community/voice for people who have gone through GBS and/or critical illness :)
I'm so glad you survived
5 years ago, I came down with GBS. Everything you described has happened to me. I was paralyzed and had to learn everything all over again. Yes the 3 months in intense care was a nightmare but this recovery takes time. You will continue to improve if you eat the foods that help your nerves heal. Continue rehab and your muscles will recover. It is 5 yrs and I'm 92% recovered. You will get there. Believe and trust.
Thank you for sharing you’re so strong and very inspiring to others that are also struggling
I'm so sorry you went through this. It sounds absolutely terrifying, I can't even imagine. It sounds like the nurses were incredibly kind to you.
Bravo April!!! You’re definitely gonna be a HUGE help to someone who experiences GBS.
You did a great job explaining what you went through and how complicated it was to get a diagnosis. So so happy you did though.
It’s so NOT an understatement that you almost died..literally!
I had GBS 30 yrs ago this past September. I was only 18 yrs old going to school FT. Listening to you brought back so many memories. I was intubated and a week later trached. Craziest experience ever. No one can really understand being trapped in your own body and hearing conversations about you. Being conscious of what was happening but having to blink on a letter board to try and express yourself.
I cringed watching you being sat up on the side of your bed. I screamed through my trach bc it hurt so so bad. And getting your lungs cleared bc you can’t do it yourself. Whew!!!
Anyway, I LOVED hearing how you reflected on the positive experiences, those surely kept me going too.
Keep up the great work! I’m so happy for your progress thus far and will be checking in. You’re an awesome storyteller!!
I witnessed my uncle with this condition. at first we thought he was having a stroke. within 8 hours he was on a breathing tube for the next 8 months unable to move or speak. Congratulations on your recovery journey! Its such a terrible disease. youve come so far!
January will be a year since I was fully paralyzed with Transverse Myelitis (extremely similar condition to GB). I got what I think was COVID and a little over a week later is when my episode occurred. Even though I still have some issues, I can walk and function again and I'm so grateful. Hoping your recovery is even better!
I went back to watch the PT clips after hearing the story and it made me tear up. You are incredibly strong❤️
This is why every patient needs an advocate regardless of what the heck is going on elsewhere. Family should not be excluded from being with patients ever.
Hi April, I happen to stumble across your video and this brought me to tears. I started as an ER nurse, now working as an nurse practitioner in the hospital as a hospitalist and hearing your story was very inspiring.. I’m sorry this happened to you but I’m glad you’ve overcame it snd is on the other side of it. You’re a beautiful soul and human being and you deserve nothing but the best. May you continue to recover and heal from this and again Thankyou for sharing your story. It’s humbling ❤️🙏
Individuals like you are the reason I am still here!! Thank you :)
Started too late. Totally negligent. What a terrifying experience for you when you were left alone for a wk. getting worse. So glad you have a complete recovery. AND glad you have good health insurance. Some people get booted out of rehab before they are ready and end up in a nursing home w/o PT, OT nearly as much. Happened to my cousin who didn't have any family to help her.
I’ve got a friend of family with GBS who is being booted to a nursing home right after IVIG because their insurance doesn’t cover enough until Jan 1st so they’re delaying all their PT until January and not doing anything to educate on PT methods or mobilizing limbs. That’s what led me online and how I found this video
Sorry you had to go through so much pain and suffering . That said , it took too long to get someone who knew how to do an LP ( Lumbsr Puncture ) . With the stiff neck and flu like symptoms they should suspect meningitis , the CSF needs to be drawn and sent to the lab for glucose and protein levels . I know its hard to assess and diagnose Guillaim Barre syndrome, but it should not take over a week . Experienced staff recognize the symptoms before it gets out of hand and begin treatment . Having covid got in the way of you being diagnosed promptly . The important thing is , they moved quickly when you started to go down hill . Your rehab sounds like you received excellent care . Cheers !
This was genuinely so informative and inspiring. I’m so glad you’re here!
I am sending positive vibes and prayer's for your speedy recovery.🙏🙏
Hey hun. Sending you lots of love. Thank you for being so vulnerable and sharing your story. You are incredibly brave and I am so so inspired by you.
My 8 year old (today) was diagnosed with GBS at 4…lots and lots of therapy, PT, OT, and vision therapy for about 1.5 years. She is competing in gymnastics today. Lots of love and prayers in your recovery.
Wow that's amazing to hear! Thank you so much!
Motivation comes in strange ways, they told her what she wouldn’t be able to do and she was head strong and fought. Praying you remain determined in your fight.
Morning from 🏴,stumbled across your post.
As a GBS /MMNCB I felt your pain and journey,I am still struggling 7 years on .
Still on Crutches,balance issues,peripheral neuropathy,muscle wastage.
3 months in hospital after paralysis from neck down.
This condition is physically debilitating and mentally,socially,financially.
Actually I could write forever on my horrible experience in out hospital here in England.
Ps! OMG lumbar Puncture hell ,like a thousand lightning strikes down right leg.
Stay well
My friend had it and it attacked her brain too and she was in an induced coma for a long time, she can't speak properly or walk yet, it is three and a half years on for her...
Try sports/deep tissue massage, cannibis and accupuncture xxx
Gratulations, April, on how far you've come!!! You're incredible! Your video was wonderful. It reveals how bright you are. Your thoughts are beautifully organized and expressed. I would never know you had once had neurological deficits from watching and listening to your video, and that is amazing given the assault your neurological system experienced. I believe you when you say that there are a number of things you aren't doing as well as you did them pre-GB although I suspect that wouldn't be obvious to someone watching you do them. Please be patient with yourself. Also, perhaps you can begin to take inventory of the NEW strengths you've developed as outcomes of this extremely traumatic experience. I wish you the very best!
Thank you SO SO much for your kind words- they mean so much to me. I am definitely trying to focus on the things I have earned, more than the things I've lost!
Oh I have a friend who recovered from GB and she was in her 70s. I'm so sorry for everything you've been through. My very best to you.
You're so right. We need to appreciate the small things every day. You're story is amazing! You are very strong and courageous! Keep it up! 💪💪
Thank-you for sharing your story! I can’t even imagine what you went through and I hope for your continuous healing and a return to normalcy. My Mom passed away after complications with GBS and I don’t think I ever really fully understood what she went through.
I am so sorry for your loss.
Hi April, thank you so much for sharing. You're remarkable, as are the support staff who helped you through this. Happy that you're with us.