tag:blogger.com,1999:blog-8564049605098810606.post7699941487042288739..comments2023-05-13T22:05:57.043+02:00Comments on My Experience with Guillain-Barré Syndrome: My Experience with Guillain–Barré syndromeTrevor Sammuthttp://www.blogger.com/profile/15902459469727916765noreply@blogger.comBlogger35125tag:blogger.com,1999:blog-8564049605098810606.post-35156701766201368172023-05-13T21:07:12.289+02:002023-05-13T21:07:12.289+02:00I just found this blog as I'm going to be stud...I just found this blog as I'm going to be studying abroad at the University of Malta less than a year after my GBS diagnosis also while I was abroad. Your story is reassuring to me that I'll be in good hands should something happen again while overseas.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-24131092549089089232018-10-31T10:57:34.409+01:002018-10-31T10:57:34.409+01:00Thank you Anne Marie. I appreciate your comments (...Thank you Anne Marie. I appreciate your comments (as well as the other readers and commentators). Remember, at the top of the main blog page there are follow-ups to my story. TWO YEARS LATER, FOUR YEARS and SIX YEARS Later. <br /><br />Thank you all for your support and for reading my story to recovery. I'm glad I've shared this with the world, it's been helpful for me too, as well as for others worldwide. The 'magic' of technology.Trevor Sammuthttps://www.blogger.com/profile/15902459469727916765noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-37154650371179201442018-10-31T10:52:01.702+01:002018-10-31T10:52:01.702+01:00Hello Trevor, I’ve just come across your blog whic...Hello Trevor, I’ve just come across your blog which I found very interesting indeed. I got GBS 12 years ago and spent a couple of weeks in St Luke’s hospital in the HDP unit and 5 months in Boffa. From someone who couldn’t sit still, then becoming someone trapped in her own body, it was a horrible experience but with such good care, meeting so many special people, and a lot of hard work, I got through it. I was left with some mobility problems and hand tremors but I’m quite independent and happy! Thanks for sharing your experience!Anne Mariehttps://m.facebook.com/anne.marie.543792noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-23801729454244886672017-11-06T03:46:10.076+01:002017-11-06T03:46:10.076+01:00I got GBS 9/27/17 from the flu shot. I went to the...I got GBS 9/27/17 from the flu shot. I went to the hospital immediately and got treatment almost right away. I feel very lucky compared to many of the stories I see on here. I've regained the motor skills in my hands and fingers. I still have some pain in my hands and feet, but have been walking fairly well. It was so depressing. I was an athlete before this so it was really an emotionally painful hit. But this is just something that I will have to work back from like anything else. Thank you for your story!!Lydia Dalehttps://www.blogger.com/profile/06985996392217270527noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-41695352718139013992017-06-20T20:38:11.576+02:002017-06-20T20:38:11.576+02:00Hello I am Angela, in the 1978 I was diagnosed wi...Hello I am Angela, in the 1978 I was diagnosed with this. I was 7 years old, only mine started in my eyes. I still had pain in my legs and hands. I have foot drop and havealot of problems because of it. It has been a very long road for me. Even now my hands and feet hurt, and have a lot of weakness everywhere. Do any of you still experience problems after ?Anonymoushttps://www.blogger.com/profile/14018710708810700200noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-12746833680282199172016-11-09T14:55:32.611+01:002016-11-09T14:55:32.611+01:00My son came down with this in August and was final...My son came down with this in August and was finally diagnosed in October. It is a long journey for sure. Thank you for sharing your story. GBS is challenging for all concerned. Your story gives me better insight on how he might be feeling as he is quite an introverted person. Best always!Anonymoushttps://www.blogger.com/profile/11012301839724665112noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-31354930664233948262016-09-21T00:57:55.338+02:002016-09-21T00:57:55.338+02:00I at day 41 and in pain, your blog provides some h...I at day 41 and in pain, your blog provides some hope. The pins and needles for me is quite severe.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-46548885213152266702016-09-02T22:29:29.348+02:002016-09-02T22:29:29.348+02:00The FOUR YEARS LATER page is also online - see the...The FOUR YEARS LATER page is also online - see the link at the top of this page, on the right.Trevor Sammuthttps://www.blogger.com/profile/15902459469727916765noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-2298923767954224962016-09-02T22:27:59.193+02:002016-09-02T22:27:59.193+02:00Thank you for your remarks. Quoting CDC at CDC.GOV...Thank you for your remarks. Quoting CDC at CDC.GOV "Current CDC research suggests that GBS is strongly associated with Zika; however, only a small proportion of people with recent Zika virus infection get GBS. CDC is continuing to investigate the link between GBS and Zika to learn more."<br /><br /><br />One has to keep in mind the rarity of this syndome. <br /><br />On the use of artistic activities to enhance movement and fine motor control, yes, such therapies are indeed encouraged, such as playing the guitar, gaming, etc as such activities do stimulate muscles that do need the extra stimulation whilst at the same time can have a calming or pleasurable effect on the mind.....unless the patient becomes even more frustrated at trying to do a hobby that came naturally to him/her before but is now an uphill struggle due to GBS.... patience and persistence are key...Trevor Sammuthttps://www.blogger.com/profile/15902459469727916765noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-45672818866178841212016-09-02T21:07:59.678+02:002016-09-02T21:07:59.678+02:00It is so incredible to hear the stories everyone i...It is so incredible to hear the stories everyone is sharing. Thank you for doing so! I am a student within the field of arts in medicine/arts in health, and have been doing a small amount of research out of personal curiosity on the current situation and possible correlation between Zika and cases of Guillain-Barré syndrome in patients. First of all, I find this to be extremely interesting, and secondly, in the context of art and healing, I was wondering, if in conjunction with the specialties of a nurse or occupational therapist during rehabilitation, if artistic activities were ever used in aim to gain back some dexterity. I would love to know your thoughts on this, or to hear if anyone has engaged in some of these artistic rehabilitation exercises, or knows of any arts-based research that is being conducted in this focus. Much appreciated, and thank you all again for sharing your stories!Anonymoushttps://www.blogger.com/profile/04689286502803999082noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-15061190294210541382016-02-06T20:15:19.844+01:002016-02-06T20:15:19.844+01:00Such a terrible disease. I was very glad to read ...Such a terrible disease. I was very glad to read your story and that you only had to spend 20 days in hospital and were able to walk again. I wished the same for myself, but I am still fighting with GBS almost 20 years later. <br /><br />Congratulations!Feral And Off The Railshttps://www.blogger.com/profile/00874644030718086819noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-68146783691970075602015-12-29T05:36:41.971+01:002015-12-29T05:36:41.971+01:00Greetings Trevor, from Minnesota, USA. My name is ...Greetings Trevor, from Minnesota, USA. My name is Melanie, which literally means "mysterious" much like GBS which I was struck down with July 2012. First symptom for me was extreme pain in both my feet/toes which lasted exactly 30 minutes, then they were numb. Three hours later, Both hands/fingers experienced the same pain for exactly 30 minutes, then they were numb. This was on a Friday late afternoon and by Sunday morning at 6:00 a.m. I thought I was having a stroke because I had such weakness that I couldn't walk unassisted. My daughter brought me to the E.R. and within 2 hours I was paralyzed from the neck down. Two days later, in ICU, the left side of my face became paralyzed also and I had great difficulty speaking and even more difficulty being understood. I stayed in ICU for over 2 weeks and then was transferred to a nursing home transitional care unit for 5 weeks. I had physical, occupational, and speech therapy while there. Here I am, 3 1/2 years later, still not completely healed. I have numb extremities, balance-challenge, and weak legs. I still need to sit for a few minutes after I take a shower, while the sweat pours off of me from over-all weakness. I, like you, would not trade my GBS experience if given the chance. I'm very glad you have come along so well on your recovery and that your darling wife has been by your side. I can so identify with you about the emotional aspect of GBS, but what else can we do but fight?!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-73830988379960500142015-12-05T03:45:31.240+01:002015-12-05T03:45:31.240+01:00Hi Trevor, I read your blog and felt a familiarity...Hi Trevor, I read your blog and felt a familiarity - I'm an Aussie girl with GBS (January 2015) and thought you sounded like an Aussie guy, until I looked up the hospital you attended - surprise! Your detail reminded me so much of what I have been through. I spent 2 months in ICU, then onto rehab, total of 6 months away from home. I hope Fiffy cat can curl up on your lap at least. I came home to our ever aloof cat Harley - he doesn't mind if I'm there or not, as long as someone lays the food on! I certainly have my down moments. My rather stiff fingers don't worry me too much; I can now touch type again, which I'm very thankful for, and use a pen. I can walk, albeit, a little 'robot' like, but slowly improving. My feet are extremely sensitive, and with my nephew's wedding to attend at end of December, I probably tried on 20 pairs of 'comfort' sandles and could find only one that I could walk in for a couple of minutes without discomfort. The other thing that bugs me is my mouth; it seems to have changed shape with the upper lip area somewhat swollen and stiff - I therefore have trouble eating 'nicely' and keeping food in my mouth while chewing, so I so far have avoided social eating gatherings, but with Christmas and wedding coming up, will spend time with my hand in front of my mouth as I eat. I know that my mindset is all important; the motivation to exercise, to make contact with friends, to get out of the house and remind myself that there is always someone else struggling with more than I have on my plate. All the best Trevor, from Lynne in Melbourne, Australia.Anonymoushttps://www.blogger.com/profile/05992963177703009005noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-46265205714677973442015-07-15T16:19:56.483+02:002015-07-15T16:19:56.483+02:00Thank you all for your comments! It's quite in...Thank you all for your comments! It's quite incredible, as the hits on this blog keep increasing. I plan to post my progress at year 4 away from diagnosis...<br /><br />I sincerely thank you all for taking time to read my story for sending me your comments. There is nothing nicer than fellow humans trying to help each other. Keep strong...<br />Trevor Sammuthttps://www.blogger.com/profile/15902459469727916765noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-91306169796787263982015-07-15T16:06:54.557+02:002015-07-15T16:06:54.557+02:00Hi Trevor,
First of all, incredible story! This ...Hi Trevor, <br /><br />First of all, incredible story! This article is a very informative one and I had never heard of GBS before. I admire the fact that you were able to write this so beautifully despite the fact that it is not a pleasurable experience. This article truly made me feel like I was actually living the experience with you and made me realize how strong you had to be throughout your recovery.<br /><br />I am very grateful that today you have regained most skills and that you are willing to help others who might be going through the same experience and also those who, as you stated, may feel reluctant to change their life, to build up the courage to do so, because nothing in life is impossible if you truly work hard for it.<br /><br />Another thing which I found very striking was the fact that you were able to find the positive in this tough, challenging experience. To me this is very inspiring and meaningful. <br /><br />To conclude I would like to wish you the Best of Luck in life and I hope you continue to view things, the same way you did with GBS.<br /><br />Regards,<br />Martina Frendo (Malta)Martina Frendonoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-78778950269476873602014-10-24T16:36:53.714+02:002014-10-24T16:36:53.714+02:00Hello,
Hope you are doing well now. My Dad was di...Hello, <br />Hope you are doing well now. My Dad was diagnosed with GBS a week back. Since then we are tackling this monster of a disease. Your blog gave us hope that things will be better. I have read out your story to my Dad.<br /><br />Good Luck and Best Wishes :)<br /><br />Monika From IndiaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-81467692758220602702014-10-12T20:38:35.939+02:002014-10-12T20:38:35.939+02:00Hi Trevor, I was reading your blog and you started...Hi Trevor, I was reading your blog and you started your symptoms in Nov 2011, at that time I had a surgery on Nov 1st, 2011 and then Mid Jan 2012 I had a bad cold followed by a bad flue and not because I got the flu shot as I never had it and that's when my symptoms started with my toes getting numb and my legs were sharking so bad I could barely walk, but at the same time I felt that there was something that wasn't working as I was feeling weird a part from the cold so I got a blood test done and they said that I had to take some antibiotics for three days because my white cells was up. That's where it all started, they thought at first it was from the surgery but it was to far out from when I was hospitalized in Feb 2012 and stayed there for 3 weeks.Once in the hospital I couldn't walk anymore, couldn't lift a cup of coffee either and more, but there is a lot that you mentioned that I went through as well. I saw a phrase that you use and that I said myself when I was diagnosed and that phrase is " I don't wish that upon my worst enemy " and the other one I use to say is " it literally gets on my nerves " lol and still is. I was 1 an half year I couldn't walk on my right heel just on my toes and couldn't have nothing laced around my ankle and it still bothers me. Because of the GBS I'm losing my job as I can't perform the physical part anymore (Military) so I'm being medically released maybe next year. Right now only working 9 hours per week due to too many problems and have to try to find something else that will suit my capability. I guess it will take time for it to come back, I know for a fact that I lost a lot of strength and my hands and feet give a lot of problems. I was reading the one that said that he had it 39 years ago and it seems that he still have some issues. I never heard about GBS before I got it. The pain, I can't describe it, it's EXTREMELY painful when I was in the hospital. It's the first time that I'm sharing my diagnose with someone and can understand what I went through and still ongoing. I appreciate you blog its very detailed. Good reading for anybody that is going through the GBS. Thank you Trevor and hope you have a good recovery. :)Anonymoushttps://www.blogger.com/profile/16800683084535403394noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-19855433395013579242014-10-12T19:34:20.336+02:002014-10-12T19:34:20.336+02:00Hi Sylvie, sometimes I do yes. Recently I spent 2 ...Hi Sylvie, sometimes I do yes. Recently I spent 2 days in extreme pain and after that I slept a whole day in recovery. At other times I have hand tremors and random cramps. I'm almost 3 years away from diagnosis. At other times I need to rest and then I'm better.... I guess one has to listen to one's body... Perhaps I would have over done it with exercise or physical activity of sorts... Don't give up!Trevor Sammuthttps://www.blogger.com/profile/15902459469727916765noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-61370362003632263422014-10-12T19:23:45.851+02:002014-10-12T19:23:45.851+02:00Hi, I'm wondering if your still having any iss...Hi, I'm wondering if your still having any issues due to the GBS? I was diagnosed in Feb 2012 and still have problems with my hands and feet. Thank youAnonymoushttps://www.blogger.com/profile/16800683084535403394noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-60429366542082356472014-09-23T11:15:15.365+02:002014-09-23T11:15:15.365+02:00Thanks for posting this article about GBS. You hav...Thanks for posting this article about GBS. You have opened up my mind into this type of disease. I hope that you find something that is working for you. - JenniferSpine Problemshttp://www.backpaintypes.net/noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-26478362732158318012014-08-04T14:58:40.825+02:002014-08-04T14:58:40.825+02:00Hello to all the sufferers of GBS!
I am turning 5...Hello to all the sufferers of GBS!<br /><br />I am turning 50 on the 11th of August and was diagnosed with GBS 39 years ago at the age of 11. At that time there was no medicine at all to help with the recovery process. I was paralyzed from my neck down and had to learn to move every body part through physio therapy (mostly in the swimming pool of the hospital) for the first three months. I took 7 months of absolute willpower (as you know you have to tell your unresponsive toes to move untill they do!)to learn to walk again. I was taught to crawl first and later to walk with crutches and eventually on my own. I went on to enjoy a normal life, career and two wonderful children (eldest now 20 years old). The only draw back that I live with is poor balance (I will never be able to ride a bicycle) and very poor ankles. I have broken my left ankle three weeks ago and while nursing the injury was thinking about my GBS - according to the doctor that is why I slipped on an even floor and had no control over how I fell. Thinking about it made me to Google the most current on the syndrome and I came across this blog. I am so thankful for new developments that can help a sufferer in healing. If I think back at the absolute drilling I went through with the physio's and my mom in order to teach myself to use my body again, I feel a sense of unbelief. The courage and willpower that I had received at the age of 11 to get myself up and walking again was absolute Grace! So for parents with children and the children themselves, you have my utmost empathy and I would encourage you to stick to a tight routine of exercises and lots of encouragement. For someone that does not have the syndrome it is very hard to understand how it feels when your brain tells your body to react but there is just nothing. I remember my toes were the last parts that needed to start working - I had to pinch a towel between my toes and it just would not happen! For days on end we sat with the towel and my mom told me to do it and I told my toes and they would not listen!! And eventually it happened....... a tiny little movement happened!! <br />There is hope!!! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-8889254874418289092014-06-25T20:00:48.681+02:002014-06-25T20:00:48.681+02:00Trevor, my dear friend found your Blog today. As ...Trevor, my dear friend found your Blog today. As I read, I found so many similarities with your experiences. I have felt so alone, as I really don't have anyone that has been through this before. My family and friends are a great support, but I have had difficulty expressing what I am dealing with. I have shared this with them and I'm sure it will give them a greater understanding.<br /><br />I can't thank you enough for sharing your story so eloquently. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-52014189239922617072014-06-11T08:07:20.800+02:002014-06-11T08:07:20.800+02:00As I read through your story, tears ran down my ch...As I read through your story, tears ran down my cheeks. I couldn't help but remember my own experience with GBS three years ago. You're right, it is one of the hardest things that I've had to come across in my life, and I am still battling the psychological scars that it's left me. Thank you for sharing your story, and for giving me a reason to continue fighting. It was a true blessing to come upon this blog tonight, and to realize that I am not alone. That things will be okay, and that despite my slow progression towards my recovery, there is still always hope. <br /><br />Praying for you and your family! Much blessings and love! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-88908705688591018302014-06-01T03:00:49.468+02:002014-06-01T03:00:49.468+02:00Hey trevor!! I just read your blog. I was diagnose...Hey trevor!! I just read your blog. I was diagnosed with GBS on the second of january 2014. I experienced almost everything that you have although i was only in the hospital for 11 days. My extrmities are almost back to full strength now but i had my face completly stop working for me. I was able to swallow the whole time but couldnt move any muscle in my face. My eyes wouldnt shut all the way(they still cant right now) i cant eat right because i cant manuever the food in my mouth as i chew. And i cant use a cup because i cant wrap my lips around the edge so it causes the drink to spill all over me. So i have to put all of my drinks into water bottles so i can be able to pour it in like a waterfall. I am only 23 years old but it is slowly it is coming back. But after i read this it felt so familiar. I just wanted to say thank you for sharing this and shedding some light on the recovery of this disease.Anonymoushttps://www.blogger.com/profile/02208065216526841858noreply@blogger.comtag:blogger.com,1999:blog-8564049605098810606.post-46712904515833868532014-02-06T04:07:42.575+01:002014-02-06T04:07:42.575+01:00Good on you for writing this up.
In the mid 90s I...Good on you for writing this up.<br /><br />In the mid 90s I had GBS. It probably took me six weeks before it became critical and I had a miserable time with a horrible family doctor who had misdiagnosed it as kidney stones. (The pain I felt was every night between 2am and 6am -- excruciating lower back pain) And so one day when I finally found a neurologist who gave me the name of a disease, Guillian Barre, I went home, used "Alta Vista" and found the write up of a person who had very similar symptoms as me, AND LIVED.<br /><br />(My symptoms were excruciating lower back pain, and what you refer to as lazy legs, I referred to as walking through a swimming pool.)<br /><br />So, your writing it up is almost certain to help others who will be confused and frightened by the diagnosis and google to find personal experiences.<br /><br />I spent one week in the ICU mostly paralyzed. I had no problems breathing or swallowing, but couldn't walk, and had facial paralysis. I had $50,000 of gamma globulin dripped into me to treat it in these enormous 2 liter IVs. And then one day, my neurologist got me out of bed and in my hospital gown we went into the emergency stairwell and he had me walk up and down a few flights of stairs. Quite an improvement from three days earlier when I couldn't move much on my left side and nothing on my right.<br /><br />One week in the hospital and about 9 months to truly get over it.<br /><br />And yeah, I still wonder if it will come back.<br /><br />Are you familiar with Joseph Heller? Author of the WWII black comedy Catch-22 turned into a movie in the 70s? He had GBS and for him it was a very swift onset. He wrote a book about it along with his friend Speed Vogel, titled "Good as Gold". If you are a Joseph Heller fan or would just like to read a poignant and funny book about his experience with GBS, I can recommend it highly.Anonymousnoreply@blogger.com