My Story: Guillain-Barré Syndrome
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- Опубликовано: 6 окт 2024
- This video is my testimony.
On December 21, 2018, I was diagnosed with Guillain Barré Syndrome. Little did my family and I know what was ahead nor how it would change our lives forever. Looking back, this experience taught us to look at life with a newfound appreciation for everything we are given.
I created this video to give hope to those currently struggling with GBS or something similar and show them that with time, they too will recover. This video was released exactly four months after my diagnosis, and I am now completely recovered.
If you or anyone you know of is struggling with GBS and need to talk to someone, PLEASE do not hesitate to reach out to my family and we will be happy to talk to them and/or their families. Email me at lpetersdorff430@gmail.com
Music in this video:
Song: My Story
Artist: Big Daddy Weave
Song: Oceans (Where Feet May Fail)
Artist: Hillsong Worship
Song: Miracles
Artist: Jesus Culture
Song: Never Once
Artist: Matt Redman
My uncle was diagnosed with Guillain-Barre Syndrome in September 1996 when he was 19 (8 years before I was born). His neurologist said it was the most aggressive case he had ever seen. 12 times he was given the last rights when the doctors said he would not live the night. The priest at our old parish said that uncle had a file at the Vatican because of how many times he was given the last rights and survived. He had to learn how to do everything all over again. He faught his way out of the wheel chair when they said he would never walk again. His faith got him through all the pain and he achieved his college degree. When I was born he stepped up and raised me with the help of my grandparents. He still lives with the limitations of the damage caused by the Guillain-Barre Syndrome and the memories have never faded but when I asked him how with the pain he lives with every second of every day he can love to be a goofball with me he said I am a Guillain-Barre survivor but that disease will not take my enjoyment of the life the Lord gave back to me I just have to take rest breaks that's all. Thus September will be 23 years since he was diagnosed and this December will mark 23 years since his remission began. Other then being careful about not getting the flu shot or a lot of other shots my uncle lives a very layed back life and doesn't get upset much. He has his faith and he has raised me to love the Lord. There is life after Guillain-Barre Syndrome but a very different life then the one our family had before. But we enjoy the life we moments that my uncle is still here to be a part of.
Wow, thank you so much for sharing his story. Your family has such a powerful story and connection now. Thank you.
I'm so touched with ur story. My tears start to fall coz my brother experiencing that illness. He was diagnosed with Guillian Barre Syndrome last November 24, 2020 and until now he is still in ICU. I'm praying that God answer our prayer.
How is your brother doing? My 72 year old friend is going through this right now. It started this month March 2024
I also have GBS. Thank you for sharing your story. It helps me see that there is a light on at the end of the tunnel.
At least now you know it's not a train.
Thanks for that inspirational video. I didn't have GBS but was found in my car not breathing and no heartbeat. I woke up three days later in hospital without any knowledge of what had happened to me and learnt that I had a heart attack while driving and that a whole bunch of strangers worked together to get me out of the car, give me CPR, attached me to a defibrilator to kick start my heart and organised a rescue helicopter to fly me to hospital a journey of 10 minutes instead of the 90 minutes by road. I was operated on by a surgeon originally from Afghanistan and looked after by nurses from all corners of the world before being discharged two weeks later. That was seven years ago and not a day goes by when I don't thank all of them in my silent prayers.
My mother is now suffering from GBS. She's in her 2nd day intaking IVIG. It was costly, and we are seeking support for her complete recovery.
I am overjoyed to witness your progress! My 5-year-old daughter was also diagnosed with GBS a week before Christmas, and she is currently hospitalized. Watching this video has provided me with the hope I desperately needed. Thank you!
I got GBS 2/15/2018 been there. I was 53. If you have any residuals try Reiki or just for your own well being it worked a lot for me I was a quadrapeligic for months glad you recovered. God Bless. Believe in miracles.
John, so happy your doing better. I'm 51 and got GBS 3 months ago. Just starting to walk. Definitely a very scary disease. God bless.
I am in nursing school and learning about GBS. Thank you for sharing. It was a pleasure to watch this video. Good luck and blessings to you and your family!
My son is suffering from GBS since Sept. Still can't breathe on his own a long journey I have hope and faith
hello mam can you please tell, has your son recovered from the disease and how long was he on ventilator or life support 🙏🙏
@@shallugarg3443 he was on respirator 4 weeks
Slowly was weened off oxygen. He is fully recovered after a year of therapy.
I am currently laying in the hospital going through this right now it is not fun at all I still can't walk but I try every day your story is very inspiring I am a Perfectly healthy female does hit out of nowhere sorry of some of this is messed up I'm talking into my phone because I cannot text or hold my phone Any kind words or prayers are welcome I'll take anything I can get I'm on day 11 and the hospital right now and I still can't walk or feel my fingers it was worse I was numb from the abdomen Dow him paralyzed and both arms my forehead my lips and tongue and I lost my vision and hearing luckily most of that has come back and I'm starting to get that real tingly painful sensation at my feet and hands as my nerves start to wake up I'm scared and this thing is no joke and nothing to mess around with
Thoughts and prayers! It absolutely is a battle and not an easy one at that.
How are you doing now? I wish you well. My 72-year-old friend, got this March 2024
Hi brother, truly inspiring. My son is currently in ventilator support with tracheostomy performed. Same condition as you were right now. Hoping he will get better soon like you. Am tensed but watching this video made me inspire and feel that am not the only one traveling in this road.
Thank you for sharing your story. I’m glad you’re doing better. ❤️
I am 1year and 4 months from my initial GBS diagnoses. I’m fully recovered now and am stronger than I was before. Both mentally and physically. 🙏🏾❤️
You recover naturaly ? Or medicine
Plz say something about severe pain in gbs specially in legs and back
@@MIbrar-vn5dp - This was my greatest nightmare. I've been down to 15% active muscle mass. It was hard to carry a 85-90 kg athletic body. The pain was that worse, when you have sore muscles the inflammation value is between 80-120. Mine was at 680. They gave me Cortison (which me almost killed) and it took 5 weeks for the diagnosis. During rehab, while sleeping - my body connected to all my muscles. Step by step. Once I droped to my R.E.M. sleeping phase, my brain realised that there are new muscles and tried to connect with those. I got shivering and woke up. For almost 3 months I was a walking dead - I got no sleep.
Pain in the muscles is normal, as you're not training all muscles at once, they get connected again - one after the other. Took quite some time in my case.
Had GBS in 2002-2003. It wasn't discovered for 5 weeks and when I went for a rheumatism examination to an University Hospital, they send me through lots of examinations and GBS was discovered. I am forever thankful for that Assistant Doctor. She went behind the back of her boss to the Professor and so I got medical treatment on an study level. Without her courage, I wouldn't have recovered almost completely.
Thank you for sharing your story - it shows me again, that there is a band between people who went through this. It took years to get the aftermath done in my case and it changed me forever...
Be blessed! :)
Thank you all so much for sharing your stories. Guillain-Barré syndrome is a very rare yet extremely dangerous illness, but recovery is never impossible. In my case, I know the thing that helped me the most was keeping a positive attitude, even in the darkest days. Knowing that someday soon, I would fight my way through this disease and recover. And to anyone going through GBS or something similar - please don’t hesitate to reach out for help, and thank you to all those who have reached out and shared your stories with me.
You recover medical treatment or naturaly.my son GBS patient last 9 months he is not walking plz advise me 😢
As of this moment my daughter is suffering in this illness, she's just only 14 years old it's so hard watching her struggling, please help me pray for her recovery, what can we parents do to help her to overcome this because she's also having seizure, please please help me...
GBS completely broke my family, I ended up moving to South Korea because my husband just couldn’t handle the damage the disease did to my already struggling body and we divorced but I’m in Busan recovering and falling slowly in love with a Policeman
I had GBS 8 months ago and almost back to normal except for neuropathy in my arms, hands and fingers. I was very fortunate that I didn't get it as bad as some but it still was a scary journey. I was able to walk in 10 days but it took 6 months to get back my ability to reach my hands above my head. All I can say to anyone that is going thru this right now is to hang in there. You will get better but it will take time.
You young man are an inspiration. I hope you are doing great
GBS is always different for each person! Myself 4yrs in still on crutches, balance problems, nerve problems, muscle pains. All depends on and how you first treated in hospital, as you aware even clinical professionals are unaware off Symptoms and correct diagnosis. Straightaway physio should be a priority even when bed bound.GBS is horrendous physical emotional physiological rollercoaster.
Kevin, I hope your condition improves. I'm sure there are days when it's hard to deal with, and, be optimisti. I pray that God will heal you and increase your strength. ✝️♥️
Same here. Diagnosed March 2018 and I still experience everything mentioned. Some days, I barely have energy to get out of bed to shower and prepare something to eat. A week later I have energy to do physical therapy. So heartbreaking how much it fluctuates
Just want to say I had it in 1967 and at the time I believe I was one of the youngest to have it at age 6. got it last 2 days of first grade, intensive care 17 days had 2 collapsed lungs and pneumonia, after 2 days I could move my neck and day 17 could kinda move my body I went from running playing to next day my whole body tingled next day woke up not able to move. just want to say I feel for your family, family helped us through it, mom and dad were there everyday when I woke up and when I fell asleep. I as a kid in hospital had many doctors and many great nurses and they really never dealt with GBS and I was so young so they spoiled me, doctors would bribe me with silver 50 cent pieces to lift my legs, made $100.00 bought my first minibike with it, than when I started to eat after 17 days they gave me 2 malts a day to fatten me up, my rehab was nothing like yours more like parallel bars and pool and crafts, I don't think I was ever really ever in pain, and I spent little less than 2 months in hospital and 2 months going back and forth for therapy and summer of third grade joined baseball lasted 1 year all it took was getting hit in the back with a baseball twice in one game, then it was on to playing hockey for 6 years, so it took about a year to be back to being a kid again . haven't really searched to see what you've posted just started looking up GBS with others that have had it. hope and pray if you posted other stuff that all is well, Thanks, John
So happy for your recovery! Your determination and the lord blessed you with strength and patience. Stay strong young man may the lord keep blessing you and your family.🙏
I was afflicted by Miller Fisher syndrome which is an even rarer offshoot of GB and went through similar treatment but after a year still have nerve pain in hands, balance issues and can't handle noisy crowds such as train stations or crowded buses. My breathing is also still shallow. However, like you I'm very grateful to the NHS for the amazing treatment and attention I received.
How are you doing now ? My friend is currently going through this. March 2024.
THANK YOU for this video! ❣️ My friend is currently suffering with this. Good to see the recovery process. He is 72. Probably will take a little longer we'll see. 🌼🙏
Recovering right now I’m in therapy this really encouraged me God is good
My mum also had the same Guillan barré syndrome
Please don't give up Lars
my son diagnosed doctor is Guillain Barre syndrome 3,10 years old. I need support for my son in prayers.
My daughter in law went in the hospital to have her gallbladder removed. They had postpone it because her potassium dropped. Got that fixed it. She went to surgery and came out on a ventilator for 6 days. She's now in a nursing home. She has a feeding tube, can't walk or even stand. She's 24/7 care. She has 2 kids. They see her every now and then. 1 is a junior in college and 1 is a junior in high school. She was 34 when this happened to her. Gueiann Berea Syndrome robbed her. There's no simple surgery.
wow. indeed God is faithful. I had Bells palsy, i was depressed, a christian doctor had to calm me down and tell me about GBS, that it is a more worse nerve condition. Good to see you fully recovered,some take alot of time recovering. Lots of love from Kenya
I'm not sure if you've been notified yet but there is no God.. I'm so sorry I was the one to break the news.
@@jamesmurillo144 haha 😂😂😂dude you're funny. I'm not waiting for any notification,my faith remains the same. There is a God 😇 I need not to see or touch Him but He has been amazing!
Hello!🙋🏼♀️
I too was in high school when I contracted GBS. I was beginning my junior year in 1982 and I had just turned 16.
I’m hitting 40 years since I got sick, 10-21-82.
It’s been a lifetime of physical struggles and I am still here. 💕
Thank you for sharing your story!
I am going into my 12 th year of dealing with the pain and everything that goes with this disease that no one can see your video had me very emotional to say the least . Never give up. My last nerve test( torture) has not got any better since the worst it was. Maybe I will wake up someday and not have pain but until then how do they say life goes on or in your case the show goes on!
Glad you are fully recovered. My mom got this in her 70s. She was permanently paralyzed from waist down. She died 3 years later from cardiac problems
Lars, so happy you recovered. Hoping I have a full recovery also. God bless. 🙏😊
My Stepson had GBS and nearly died, he was in the Marines when he got it. My Husband had to make an emergency flight to Washington to be with him. Thank goodness he survived it and is now in his 40's. ❤ 💙 💜
So inspiring! Stay strong
And 5yrs GBS now + Recently MMNCB it's hell physically mentally socially financially. 🇬🇧💪 Sufferers
Wow very nice recovery from such an harsh illness
Good luck to you. What a great youg man u are. God bless you in your future as he did in your past
i was crying watching your videos, my husband diagnosed with GBS and currently in ICU. I was about to give birth next month and we have 2 year old. I just don't know what to do right now😢
How's is your husband now? 🙏
I'm sorry I know bc it's been difficult seeing my twin sister with this 😭 still today. Stronger 💪🙏 everyday prayers to you
God bless you brother!
Hi how r u doing I was a gbs patient too last year I had numb ness n my hands feet legs I couldn't breath my organs shut down was in a coma woke up got strong I had to start all over again luke a new baby eat talk walk it was hard but did it the way you were I was the same but god bless you
I'm recovering time 4 month...happy
Dr nam
Plz explain recovery medical treatment or naturaly
give some valuable advises
I'm a patient of GBS right now 😢
Me too :(
Stay strong stay positive thoughts and positive thinking thair will be moments that you are mad at every one and that's ok. Do exactly what the doctor are asking of you and your physical therapist the physician therapy is hard but you must stick with it if they ask you to lift your arms lift them twice and do that with every thing they ask . You see I too have been though Gillian barre it happened to me . And I know exactly what you are going through . I'm praying for you stay very positive you can make it .. a positive mind of thinking . It might have slowed your body down but your mind is stronger dont let it get you depressed you dont need that way of thinking right now. When you go to sleep tonight see your self walking see your self doing normal every day stuff visualize it and do this every night . Also when you get back from physical therapy sleep dont get over tired . I hope you a speedy recovery my friend . From one survivor to another survivor . Mel
Stay strong.. God bless.
I hope you are better and well down the road of recovery.
@@siyamahmed5810 did u recover?
I am also affected by gbs. Completed one year still I have problem in walking without support
NASTJA
Julijana KOGOVŠEK NASTJA
How are you doing now?
God is faithful!! 🙌🙌🙏
God IS faithful!! Always & forever!!
Did your so called god also cause the illness in the first place?? In Europe, we find it amazing that in the 21st Century, people still feel the need to believe in a make believe “god”!
Thank you Jesus! God is faithful ❤
I am 1 month into self rehab, learning to walk again. further every day! whats driving me crazy is i cant open my hands fully, did you have to deal with that as well? if so any tips or exercises? in 4 days i went from normal to cant get out of bed, walk, feed myself, tomorrow is 4 weeks from last IVIG and i can now do all that. not well lol but i am able! God is good! your story was touching, i wish you the best!
Hi I'm currently recovering from GPSI was diagnosed in February 2019 I was not affected in my respiratory system but I've lost all ability to walk and the ability to use my arms and hands what tips do you have to power through
DCFANATICCK I had it 11 years ago, told me the same that It would take months to be able to walk again etc. I cut grass, walked up and down the stairs holding on to the railing. I looked redicoules but within a month I was training for a spring triathlon. I just wanted to get back to normal so I didn't sit around and feel sorry for myself. Good luck to you!
Seek God. I was paralyzed in 2001. Five bags of IVIG became my Gold Parachute. Don't give in...ever, no matter what. He is with you. Prevail in prayer with Him.
@@MARKO8885VTC did u recovered?
God bless!
Did your so called god also cause the illness in the first place?? In Europe, we find it amazing that in the 21st Century, people still feel the need to believe in a make believe “god”!
Recovering from GBS
You are a rock star!
Did you receive the flu shot before this happened to you? This happened to my brother, 5 hrs after he received his first flu shot he was on life support, he didn't feel well 1/2 hr after his shot
I am teenage Guillain Barre now
GOD bless you.
Thank God.
i was diognosed 3rd october 2018 started with tingling in my hands feet then i lost my voice and couldnt walk properly and was in agony i went to the doctors and they sent me straight to hospital and i was sent to southamton hospital and went to neuro icu and had central lines picc lines and ivig treatment and was put on a ventorlator and intubated for 15 days but recovered quickly but i still suffer to this day and take gabapentin for nerve pain i also contracted ventalted pnemonia
Hello Sir, happy that you recoverd. Could you tell that how did the muscle tightness go away? Did it went gradually or exercise helped?
Actually it was a little of both! Therapies and exercises definitely helped in the beginning and accelerated the gradual progress.
@@shotsbylars Thank you for your quick reply. :-)
"Recovery" may be faster or may be take some time
It's depend on your exercises therapies & will power with positive attitude
My 11th year is running with this disease and one day I beat GBS
My brother is suffering for guillian barre syndrome b'coz im here to see what that 😢
Sir im krimson bernido my grandmother have guillain barre syndrome gbs yesterday finding by doctor that she have positive in gbs we need help sir because we cannot afford the bill
Krimson Bernido they will have payment plans based on what you can afford each month.
If this was an older person they would simply send him home. This kind of 7 x 24 care that can last a year or more is cost prohibitive. Sad but true, in this country where "healthcare" is for profit business like any other. This is not about your health, or your well being.
Well that's not true here in Minnesota. My friend is 72. Got GBS. He didn't have much for insurance. Luckily he is in a rehab in a wonderful nursing facility. They're trying to get him off ventilator. He has a trach. Will be posting an update as things happen. March 2024
Amen 🙏
Yes we lossed our sister last year because of we dontno how to treat but laterley we gave after three days but it so late .treatmeant cost totally six lakh and seventy thousand also after fifteen days she was dead 🛌🏥😭 on April twenty seventh 2019 she got one boy child also nithesh. Suguna her name 36 year old.one Monday morning she couldn't go for toilet also 16:04 :2018 stoped all activated also .nurmness in leg it start from toe to up increasing full body attack.this one type of storke sudden death if not treated in time means my sister suguna sufferd full detail 😢😭😩I saw
hugs dear
What I grow nervous about r those humans that seems to know nothing, (per their own attempt of "Conclusion"; we seem to grow smaller
SPEECHLESS (HATS-OFF)
Hello, I just wanted to ask if you experienced tremors before?
Seizure?
What was the main remedy?
I am lucky to not have ever experienced either of those, for me the best treatment was a combination of plasmapheresis and IVIG.
Try googling or doing RUclips search. My friend was a chronic alcoholic. 72 years old. Not sure why he got GBS. But he was having problems last year. And then March 2024. Currently suffering from GBS.
My brother had this
Çok sevdim çok zor bir hastalık yürekten sevgiler
🙌🏿🙏🏿
how do I get in contract with you my mom has gbs
Feel free email me!
Please give contact of doctor , I have no recovery from gbs till date.its been 26 years now
Try Reiki energy healing it seems to reroute the electrical signals sent and received. I am not 100 percent but defiantly better than I was.
26Years
POR FAVOR A Tradução
🥰
Hi my young brother who is just 19 years old is facing GBS please help us to know when he will recover how much time will it take we can not see him like this 🥺 we need motivation please connect if possible and suggest when he will get back to normal he is suffering from this disease he admitted to hospital on 29 aug 2020 and still no progress at all he is not able to walk his hands are not working than they shifted him to ICU now he is at ventilator we are not able to understand anything also I would like to know if you that what causes this disease... please advise
How is he now?
He has recovered 80%
Kya Aapke BHAI ka number MIL sakta h
It's good to hear that your brother 80% recovered
I suggest him please focus on basic exercises and therapies.
If he neglect them Last 10-5% recovery take time
@@CHANDRAPRAKASH.SONI2 do you need any suggestion from him?
I was attacked by GBS in 2023
Been there. Not a lot of fun.
i am patient of gbs
Now?
So am I
If you were black, homeless, and not insured... You'd be dead.