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Guillain-Barre Syndrome
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My Experiences
Provide Help Info
Survivors' stories
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We'd like to know what you think about my web
site. Please leave your comments in this public guest book so we can share your
thoughts with other visitors.Add Your CommentsDue to spammers using my website to try to advertise websites not suitable for all viewers I am temporarily disabling my Guestbook feature. Please e-mail any comments to me that you would like to have added and I will enter them manually.
I'd like to know what you think about my web site. Please leave your comments in this public guest book so I can share your thoughts with other visitors. I would appreciate your including what State or country you are from. And please include what search engine you found my website with!!
Date: 11 Nov 2002 Time: 14:07:56 Remote User:
CommentsWill check back to see more of your story. Good Luck. Date: 11 Nov 2002 Time: 16:33:39 Remote User:
CommentsI really like your site. You did a great job with it. I was real curious where you were hospitalized each time and what your opinions of each were. We are part of a brotherhood. Hang in there. Robert Allred 1994 GBS Survivor Date: 11 Nov 2002 Time: 19:50:14 Remote User:
CommentsHeath, you are an amazing and inspiring person. I am so proud to have you as my friend. I have seen you accomplish so much since you came to Kansas City last year!! You are truly an inspiration and I am so proud of you for creating this website to help others! You are helping so many people!!!! LJ Date: 11 Nov 2002 Time: 20:24:12 Remote User:
CommentsHey Heath!! Looks good so far. Keep it up. Hope to make it home soon. Billy Boy Date: 11 Nov 2002 Time: 20:54:09 Remote User:
CommentsThis is great, as this is such a rare disease. I am a recovering GBS patient myself and enjoy reading about others who have GBS. I added this to my favorites-so will check back. Thanks, Donna Date: 12 Nov 2002 Time: 10:23:31 Remote User:
CommentsWhat a wonderful site and great ideas! This is definitely a life altering experience. Will check in often! Date: 12 Nov 2002 Time: 10:33:04 Remote User:
CommentsSite looks great. I'll be interested to read the survivor stories when they come in and I hope I can post my dad's story after he gets a bit better. We're 9 months into this crazy thing and have a long way to go. Keep up your great work. Date: 12 Nov 2002 Time: 12:48:19 Remote User:
CommentsDear Heath, Thank you so much for doing something like this. As your Aunt, it lets me know where you are, what you appreciate, and what doesn't work! As a nurse, it will help me in communicating with various nationalities and their families & caregivers, the multitude of diseases we see that rob individuals of being able to perform activities of daily living and what they want us to be aware of when they cannot speak for themselves. As for improvement to your website, just don't leave ANYTHING OUT! Thanks...you have been and still are a very "SPECIAL" nephew. Love, Aunt Audrey Date: 12 Nov 2002 Time: 17:57:10 Remote User:
CommentsI thought your Web Page gave an excellent overview and will certainly serve as a support and help to others. We need to hear the successes and keep the flame of hope fanned. I wish I was as computer literate so I could make one on CIDP - ah well. Sue - jeffs@buckeye-express,com - Ohio Date: 12 Nov 2002 Time: 19:30:34 Remote User:
CommentsI thank God daily for you. We have known from the time you were born that God would use you in a special way to encourage those that become part of your life. Your smile and laughter have always encouraged those around you and now your story will provide strength and understanding to those who will follow you through this nightmare of an experience. We continue to be thankful in our daily prayers. Chaplain Jim Date: 13 Nov 2002 Time: 01:15:45 Remote User:
CommentsDear Heath, Thank you for clueing me into your web site.. It is great...and you are very amazing.. I am so very proud of all of your accomplishments...you have come a very long way.. It just blows me away at your "Sept." story. YOU HAVE MADE IT!!!!!..even tho you still have a ways to go...you have reached so many of your goals...You can complete a day by YOURSELF!!!! What a wonderful feeling that must be. You have put a lot of time and energy and persistence into your therapy. You are a very determined young man. You deserve a lot of PRAISE. I am so glad I got to know you while you were in MN. I feel very close to you and your Mom, who by the way is a very neat lady. You have a lot of people praying for you and I believe you are God's Miracle Child. May HIS Blessings continue upon you. Keep up the great work on your therapy and your beautiful web site. All my love, Arlene K. Date: 13 Nov 2002 Time: 12:45:09 Remote User:
CommentsHeath this is very good. As far as color scheme I would only suggest that keeping it simple with less graphics makes it easier to read and print for sharing with others. Some of us don't always have fast connections. Keep up the good work and hope to have you as our guest here in Houston sometime, let us know. Marcelino Gonzalez Date: 13 Nov 2002 Time: 19:33:18 Remote User:
CommentsHeath, Once again you continue to amaze me and inspire others. I have bookmarked this site to continue to keep up on your progress and gain insight into what it has been like for you this past year and a half. Although I will never fully understand what you have been through, I will continue to have a better insight through this website. I said it once already when I first read "A Good Day" and I will say it again, I am proud to call you my friend. Keep on pushing and I look forward to seeing you again. Scott Coykendall Date: 14 Nov 2002 Time: 10:32:45 Remote User:
CommentsThis is a great idea. I'm sure it will help a lot of people. answers lots of questions I had. I love you!!! Mindy Date: 14 Nov 2002 Time: 20:01:01 Remote User:
CommentsHeath, I've told you once and a million times, you are my hero. You always will be. I am so fortunate to know such a strong person and will continue to look to you for advice. Nothing seems as bad when I think of the struggle you've been through. I tell your story to all that will listen. Love you! Wendy Date: 16 Nov 2002 Time: 17:58:49 Remote User:
CommentsYou are doing a great job! Thanks for being willing to share your life and experiences with others who need to be encouraged. I contracted GBS in May 2001 also. I was just finishing an RN-BSN program and had been accepted into graduate school for that fall. Instead of grad school, that August, I was admitted into an inpatient rehab facility. I went in on a stretcher, unable to move anything below my waist and extremely weak above the waist and in terrible pain. I can remember how scared I was the first time they got me out of bed and into a wheel chair (First time sitting up for over 3 months). Within a month, I was walking some with a walker and could feed myself. With extreme effort I could even dress with a little assistance, and prepared to return home. By Christmas, I was walking with a cane and able to do most things for myself (albeit with lots of rest). Last June, I finished the BSN program and in August started grad school. Since, I do not have sufficient strength and stamina to return to regular nursing or to work full time, Vocational Rehab with our state labor dept. is paying for grad school and I am receiving social security until I can return to work. I should be able to work part time as a nurse practitioner when I am finished with school (2005). My heart's desire is to establish a center for migrant workers, providing medical care, daycare, nutritious meals and a place to shower and wash their clothes and of course, church services; eventually adding housing too. With God, anything is possible. Just look at you! Thanks for being you and not giving up. Keep your light shining brightly, Deborah Date: 16 Nov 2002 Time: 19:14:47 Remote User:
CommentsHey Cuz! Great site and what a wonderful idea. I know this will help so many others who have or have had this terrible disease-you ROCK:) I look forward to seeing what you conquer next. All my love, You cuz, Kathy Date: 21 Nov 2002 Time: 19:25:26 Remote User:
CommentsYour web site is a blessing. I am a survivor of GB. It was in 1974,I had just turned 21 and woke up one morning with my legs numb....and before I knew it i was having a trac put in and i was on a respirator for 3 months....back then, no one really knew what GB was about. It too two long years to get back to normal. Such a long painful road, but with patience and time survived. I believe if it were not for the long physical therapy i received I don't believe id be walking today. God Bless you! Date: 22 Nov 2002 Time: 02:58:58 Remote User:
CommentsHey! It's Karen from KCVA Micu. It's great to see your pictures. Donna updated me. This site is wonderful. Take Care. Date: 24 Nov 2002 Time: 15:39:25 Remote User:
CommentsDear Heath: I found your site on the www.GBSFI.com website. I like your Good Day story very much. I remember the first time I accomplished such milestones as standing up unassisted for the first time and for me the biggest milestone was to be able to walk over a curb at the Fry's store, but that is another story. I really like the whole site and I am also glad you are taking an active role on the GBSFI website. You are doing excellent work. Maybe we will meet in the chatroom. Your fellow GBS survivor, Lee Spurgeon Date: 26 Nov 2002 Time: 10:14:32 Remote User:
Commentshi heath, you are putting quite an effort into this site. it is good now but i can see it will grow & become more powerful. take care, gene Date: 05 Dec 2002 Time: 08:05:57 Remote User:
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Fair Winds and Following Seas, Natalie and Tayah Date: 17 Dec 2002 Time: 18:39:25 Remote User:
CommentsNice page Heath... very informative... see ya around the GBS boards.. Andrea Date: 21 Dec 2002 Time: 12:34:38 Remote User:
CommentsHello son, This has been a very hard thing for us all. Lots of ups and downs. You have been my tower of strength and inspiration! I can remember only two times you broke down into tears....which was due to some bad nursing. I never heard you say "Why me." Not once. You have been very strong and positive throughout this whole thing. Without that where would we be? Now that some time has past and you are able to look back on all of this, you have found a way to help others. I am very proud of you and it is an honor to be able to call you Son! There were many times we thought you might die, and we are so glad you didn't. This has been an awful experience but we have learned some very valuable lessons and gained some wonderful lifelong friends! We truly have been blessed and have a lot to celebrate this holiday season. All my love and admiration. Your Mother Date: 23 Dec 2002 Time: 08:10:58 Remote User:
CommentsOur Dear Nephew!! What a great joy it was for me to be with you while you were in KC Vet's Hosp. I was fortunate to be assigned in the area for 5 months and could watch your growth and have a place for Marge and the girls to stay when they visited. Tears for your pain and for your triumphs were in my eyes several times. I am not sure everybody understands that from your very beginning you were destined to be a monumental inspiration to several in our family. We thank God for you and know in the days ahead you will be a further instrument in God's plans for you. We send our love, joy and Peace. Uncle Bill and Aunt Marge Date: 24 Dec 2002 Time: 07:09:03 Remote User:
CommentsHi Heath! Great web site. It's reflective of the time and effort you put into recovery during therapy. I think about you and your mom often; you're both very special people. Hope you enjoy the Holidays. Becky (Minnesota) P.S. I'm still waiting to see a recent picture of you and your truck. Date: 27 Dec 2002 Time: 01:09:29 Remote User:
CommentsDear Heath, You are doing a great job on your website..It looks neat and I love all the pics you have included. Keep up the great job...I hope therapy is going great too. How is school coming?? Take care, All my love, Arlene Date: 27 Dec 2002 Time: 18:33:11 Remote User:
CommentsHi Heath: CONGRATULATIONS!!!! Thank heavens you are a survivor..........That must have been terrible...I cannot imagine what you have been through....I also have GBS, but certainly mild compared to what you went through...I have only been sick since Nov 13th of this year, and have made great strides...I spent 24 days in the hospital, and am in therapy now. I still have very little feeling from the waist down, it isn't any different than it was, feeling wise, but I do now have the strength to walk with my walker. You are doing a great job with this website, I would love to correspond with you, I am having some difficulty in my hands, I had 4 IVIG's while in the hospital, and the Dr wants me to have 6 more within the next 6 weeks...I have lots of questions. please write me if possible...Linda Garrett limoga43734@yahoo.com Date: 04 Jan 2003 Time: 10:25:46 Remote User:
CommentsHeath, Have you spidered your site out on the major search engines? Google is a good one. It's where I went to find info on GBS originally. I didn't notice your site come up under the first 10. Too bad, it's a very informative site. Good job! Brrr in Alaska Date: 04 Jan 2003 Time: 19:48:56 Remote User:
CommentsHeath. you are my strength, did I mention I love and respect you??? K Date: 05 Jan 2003 Time: 23:08:26 Remote User:
CommentsThank you for having the strength to share all of your story with us. You are an amazing individual, a survivor, a fantastic listener, an all round great bloke. You put a smile on my face, inspire me to enjoy every second of my life and leave a glow in my heart every day that i speak to you. It is an honour and a privilege to know you. Cheers - Nichole Date: 08 Jan 2003 Time: 12:37:49 Remote User:
CommentsMy brother has gbs. He has been in the hospital for 1 month so far, still running fever. They are going a trach tomorrow. Your outcome has made us so hopeful. Thank you for sharing. Lynn Russell Date: 09 Jan 2003 Time: 13:02:09 Remote User:
CommentsHeath, Your site is so cool. I really enjoyed reading it. Thanks, Dion Francis Date: 09 Jan 2003 Time: 15:51:05 Remote User:
CommentsHi my name is Terrie Cornish and I am recovering from GBS for 5 years now. I am mow walking with a walker. I had a very severe case 9 months in hospital 6 months on the vent. I think your web site is wonderful reading your story brought back many memories mucus plugs, and the dreams I thought I was the only one. Thank you for doing this Terrie Date: 12 Jan 2003 Time: 12:49:38 Remote User:
CommentsGreat web site. As soon as I finish Brandy's story (a success story) I will forward it to you. GBS changed our lives forever but we are thankful daily that she has recovered. May love and sunshine fill you days and may you always be blessed. ~Maggie~ Date: 14 Jan 2003 Time: 10:45:03 Remote User:
CommentsWow! Heath! What a journey you have been on! I feel as though I have done nothing. I came down with GBS on Nov 30, thought I didn't know what it was until four days later when I had my husband take me to ER as I said: "Something is very wrong. I am becoming paralyzed!". Luckily my doctor recognized the symptoms and had me moved to a hospital in a larger city where they would know how to treat GBS. The second day I was in ICU they began Plasmapheresis. I think I peaked three days later. On Christmas day I took three tiny steps and was able to walk with a walker two days later. Things just began to "wake up". I am home (30 days after being admitted) and my face is half paralyzed, my toes are numb and my back is numb. I feel like a baby compared to what you had to go through. You are an inspiration and I promise never to complain about my condition!!!! As to the site, I would love to know what people are trying as to "natural" or "homeopathic" remedies and what, if any, success they are having. I have learned that vitamin B-12 helps make the myelin sheath and the only really good food sources for B-12 are liver and heart of beef, pork, poultry, none of which have I ever acquired a taste for! I've ordered a liquid B-12 supplement (with other B vitamins to help the body absorb) and am anxious to see if it makes a difference. I'll let you know. The only other thing I would probably add is a note on your photo album that the pictures will enlarge if one "clicks" on them. I just tried it and was pleased that I could see the photos enlarged. I don't know what else to say except that your story is incredible! Bravo! Thanks for the site. Jodie
Date: 14 Jan 2003 Time: 19:58:40 Remote User: Comments It is coming along nicely....hard to believe you have never done this before. ~G
Date: 17 Jan 2003 Time: 04:18:40 Remote User: Comments feroze mohamed seedat south Africa son diagnosed with gbs 29/12/2002 progress quite ok washing machine/plasma/glubulin quite nice to read your progress/ god bless good luck feroze@GLOBAL.CO.ZA
Date: 22 Jan 2003 Time: 02:01:23 Remote User: Comments Dear Heath, I have read some of your updated information. I am just amazed at the stories that are coming in and what others have had to go through also, like you. I am so glad you are doing the web site and what a great job ... it looks very good and is so interesting. It truly is a help for others who have GBS or who want to know more about it and also want to know how to be of help to friends who have GBS. You have come a long way towards recovery and it is just amazing what you have accomplished once you set your goals. God is truly amazing and has done a lot of miracles for you and now through you with the use of your knowledge, experience, and compassion for others. Keep up the great job.. I love you very much and continue to pray for you. All my love, Arlene K.
Date: 19 Feb 2003 Time: 18:56:55 Remote User: Comments You are doing a good thing.... keep it up.
Date: 25 Feb 2003 Time: 15:20:02 Remote User: Comments THANK YOU FOR THE GREAT WEB SITE,I AM NOT A GBS PATIENT BUT I WISH TO KNOW ABOUT GBS, MY SISTER HAS GBS (AMSAN). THANK AGAIN RENNIE FROM CA.
Date: 02 Mar 2003 Time: 22:45:55 Remote User: Comments Nat & Tay
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11 Mar 2003 Time: 08:18:03 Remote User: Comments I am also a recovered patient. Had a nasty attack in dec '95. Was on a ventilator for 4 months and then a normal room for another 3 months and then a year long rehab visit to the hospital with physiotheraphy. I have residual bilateral foot drops. Managed to survive and fought back this mess called GBS nice site interesting radha sriram india Date: 24 Apr 2003 Time: 14:58:13 Remote User:
CommentsSome great info here... thanks for sharing. Date: 24 Apr 2003 Time: 15:19:40 Remote User:
CommentsAwesome! Date: 24 Apr 2003 Time: 16:16:39 Remote User:
CommentsHeath, Thank you for this website... My mom has been in the hospital for three months, on a vent and is starting to show signs of recovery... She has Miller Fisher variant. I will continue to view this site for more information. I am so proud of you and your bravery because I know what a struggle it is for all of you! All the best to you now and forever! Bianca Ware. Date: 27 Apr 2003 Time: 08:01:21 Remote User:
CommentsHeath, Thank you for your website. My mother has GBS. Her story is similiar. It has been three months. Hearing your story gives us hope. Date: 07 May 2003 Time: 14:20:20 Remote User:
Commentswhat a journey. ~W Date: 23 May 2003 Time: 06:00:21 Remote User:
CommentsTHANKS FOR THIS!! Date: 24 May 2003 Time: 16:43:45 Remote User:
CommentsThank you, Heath! Your openness and candor about everything from how your trach looked to tips for getting out of a bath are just what our family is ready to learn. Our 32-year od son, Michael, is 12 weeks into severe GBS. Just now off the vent and resuming oral feeding. About to transfer from ICU to the Rehab wing. You know the rest! I have passed on your website to evreryone in our family and, if okay with you, will reference it when we update MIchael and Kym's website: www.michaelandkym.com Godspeed and good health always to you! Marilyn Tedesco Date: 24 May 2003 Time: 19:17:45 Remote User:
CommentsYour web site is wonderful. I will visit again. Yesterday was my 2 year anniversary of being hospitalized with GBS. Thank you for sharing your experiences with everyone, we need to get the word out to as many as we can! Mary Freeman maryjogl@aol.com Date: 26 May 2003 Time: 14:43:04 Remote User:
CommentsHeath, I found your web site very informative and helpful in dealing with my mom's illness. We are in week 6 of hospitalization with her and her 3 round of treatments. The highs and lows are exhausting. I am glad you are well and fought this disease so successfully. Many people would have given up. Laurie Date: 27 May 2003 Time: 21:05:25 Remote User:
CommentsHeath, I'm also a recovered GBS, with Miller-Fisher Variant. Your case was far worse than what I experienced. The IVIG worked for me and kept me from have the respiratory phase. I came down with the paralysis at the end of July 2001. Still have some small paralysis in my face and tingling in my toes. All else has returned to normal. George Date: 28 May 2003 Time: 22:29:38 Remote User:
Commentsheath, yours is the first site I've seen, that i can really relate to. it is awesome. at risk of sounding corny, it made me laugh & made me cry (literally) keep up the good work. you have the best story & the best outcome to motivate other sufferers. emily Date: 30 May 2003 Time: 05:36:08 Remote User:
CommentsG'day Heath, Good to see you making such a wonderful recovery, we are very proud to say we have met such a courageous person as yourself. We are having a very nice evening here at Louisa Creek and thinking of you and what you have been through. We have a nice cold beer here with your name on it, in its own cooler. Looking forward to seeing you here in Mackay, Australia again. All our love and best wishes, Congratulations The Gardner Family, Mackay Queensland. Date: 30 May 2003 Time: 05:40:50 Remote User:
CommentsG'day Heath, Good to see you making such a wonderful recovery, we are very proud to say we have met such a courageous person as yourself. We are having a very nice evening here at Louisa Creek and thinking of you and what you have been through. We have a nice cold beer here with your name on it, in its own cooler. Looking forward to seeing you here in Mackay, Australia again. All our love and best wishes, Congratulations The Gardner Family, Mackay Queensland. Anne Gray , Michelle and kids, Nat and Tayah) Date: 30 May 2003 Time: 05:54:59 Remote User:
CommentsHi it is us mad Aussies here again we have just realized what we had done . What can we say. P.S We drank your beer for you.( Michelle, Anne and Nat) Mackay. Date: 31 May 2003 Time: 01:18:10 Remote User:
Commentsheath, this David from the forums. I would like to post my story if possible or I will assist you in any way I can. my wife and I spent four yrs in Washington and one of my sons was born at lacey. I miss the trees. Date: 23 Jun 2003 Time: 15:00:27 Remote User:
CommentsHi Heath, Just checked out your updates today and wanted to let you know that you have done a wonderful job with this. I'm glad to hear that the progress is continuing! I think it is a very good thing that your story has evidently found others who can benefit from yours. We still think off you often around here and those of us who are still here that knew you will continue to miss you. You were a great asset to Security. I forwarded your email and website address to Shelly (YN1) so hopefully you will hear from her. Keep getting better and keep letting us know how you are! Sincerely, Gwen Date: 23 Jun 2003 Time: 15:19:26 Remote User:
CommentsHi Heath, Just checked your website today and saw the updates. It is very good and looks like you're finding some friends too. I am glad that you are doing so much better. Keep up the good work! You were a great asset to Security when you were here. Those of us who are still here that knew you still miss you. But keep us posted on your progress and keep sending those jokes. Laughing at silly things can make the day go by a little smoother. I forwarded your email and website to Shelly (YN1) so you will probably hear from her. Take care and stay in touch. Gwen Date: 25 Jul 2003 Time: 09:22:41 Remote User:
CommentsHeath - great job, great site! I was diagnosed with GBS June 8, 2003 - rehabing at home now. Reading info on your site and others have made me realize how fortunate I am - many others have had a much tougher time than I have. Will give you my story when it is closer to the end - take care and God bless! Jim Oetken - jwoetken@trane.com Date: 27 Jul 2003 Time: 13:09:36 Remote User:
CommentsHello, I too have GBS, going on two years, have been told I will probably never get my sensations back. Everyone's stories give me hope even though I usually end up crying with the memories they bring back, but it is something that I will never forget, as I'm sure no one else can either. Keep up the good job at this web site. Stay safe. igmoola2000@yahoo Date: 03 Aug 2003 Time: 07:49:10 Remote User:
CommentsHiya H! Just wanted to tell you, I think you are doing an awesome job on the website (from someone who KNOWS how long all that coding takes! :) Keep it up! (and I think pics of the wedding should be up soon!) LOL Luv, K Date: 04 Aug 2003 Time: 20:06:48 Remote User:
CommentsGlad to Hear you have such a positive Attitude. I was DX'd on July 5th after two very Weird Days of Shooting Numbness thru my right hip to Toes on July 3rd I awoke on the 4th off July to Find My Waist to Toes Tingling as if they were asleep. After a Day of walking around on Ice nearest thing I can Describe. The next Day I tried to do my usual walk with my mom and when I returned I went Straight to the hospital Emergency Room to Find out why My Senses were going so wrong. At First they thought I had a Mini-stroke and wired me for Heart Monitoring then came my First CT Scan and MRI and the Test tubes of Blood they stole from me.. Well they finally said everything is normal but my ER doc Said He felt I was suffering from GBS to my shock Not very much was Told to me about the Symptoms or what GBS was. Anyways I went to a Neurologist and was immediately Put in the hospital for Spinal tap and More MRI's and C-spine t-spine and such after 4 hours they told me my Protein Levels were 5% high and that's all they could find. Next I got My First IVIG treatment overnight in Hospital then was scheduled for More the Next day at out-patient like you said being a Friday the next day they could not get the treatment for me set up till Monday, tues and Wednesday with a follow up Visit to my Neurologist that same day, he gave me Neurontin 3 times a day and Says see you in a month. Note during this whole time I never lost my Strength and Walked everywhere I went after reading all these stories I have found on the Web i must be the luckiest 44 year old I've ever met. what do you think in 1 month almost 70% recovered will start walking with my mom again tomorrow. Thanks for Listening I needed to Just chat to someone .. Jeff e-mail jjreop@sbcglobal.net make the header GBS if you want to Drop me a e-mail because I get a ton of junk mail. Date: 20 Aug 2003 Time: 17:40:47 Remote User:
CommentsHi- Thank you for this great web site. I found it via the International GBS website by your posting to check this website (in the success story area of the International GBS website. Date: 20 Aug 2003 Time: 17:40:52 Remote User:
CommentsHi- Thank you for this great web site. I found it via the International GBS website by your posting to check this website (in the success story area of the International GBS website. Date: 20 Aug 2003 Time: 17:43:33 Remote User:
CommentsOops, I clicked the submit button before finishing my entry. I am an occupational therapist who came to this website seeking words of encouragement for a current patient in our skilled nursing facility who is currently receiving rehab for GBS. I am excited to go to work tomorrow and share w/this patient some of the survivor stories, including yours, that I found at your web site. Thanks. Nita-- Virginia, USA Date: 05 Sep 2003 Time: 07:43:18 Remote User:
CommentsI found your website to contain a great deal of information. We have just begun the Guillain-Barre battle with my 65 year old mother. It is encouraging to read other peoples experiences and relate it to how she is doing. I know the road is long. Thank you for telling your story. Jeanne Jacobs - Denver, CO Yahoo Date: 23 Sep 2003 Time: 11:52:21 Remote User:
CommentsGBS Meeting in Dallas... I just wanted to let everyone know that a support group meeting will be held in Dallas on October 4,2003. If you have any questions regarding the location, please email me at JillianAnnN@yahoo.com Date: 25 Sep 2003 Time: 20:41:46 Remote User:
CommentsHeath, My name is Lisa and I am from GA, my daughter developed GBS in June,03 and hospitalized on July 2,03.I am sorry to say that she died on July 24 due to complications. She developed Phenomia and ARDS. They could not save her. I am glad you survived. Good Luck to you. I found your site through someone on the Guillain-Barre foundation site. I hope you continue to get better. Thanks for all the information to. If you would like, you can email me at : Daze_63@yahoo.com . Oh Yes, she was 20 at the time of her death. Date: 30 Sep 2003 Time: 14:10:55 Remote User:
CommentsCongratulations on the 1st anniversary of your "A Good Day". How about an update from the one year later perspective? Also, did I read something on here about possible pics from your wedding day being uploaded? Surely that would fall under the "2nd Big Day" category. Through the course of your illness, for reasons you can't understand, I have been and always will be your silent fan. Not a day goes by that I don't think of you and how far you have come. Best of luck on your continuing recovery as well as the new beginning to the rest of your life. Little One Date: 08 Oct 2003 Time: 23:33:50 Remote User:
CommentsHi Heath, My name is Brigitte and I am in Adelaide, South Australia. My brother was diagnosed with GBS a week ago & is on a ventilator with no movement from the neck down. I have been furiously looking for information and found your site through a link from another site forum you use. Its a great site you have - it has been very eye-opening and a bit scary (who am I kidding - its *very* frightening) but we need to know, and can best cope if prepared. Thank you for the effort to help others & I hope you continue on your road to total recovery. Brigitte Date: 10 Oct 2003 Time: 10:00:22 Remote User:
CommentsDear Heath, My name is Fatima Seedat. My son Ubaid Seedat was diagnosed with GBS on 29/12/2002. He is doing extremely well and I know that he chats to you quite frequently. So does my husband, Feroze. I would like to tell you about Ubaids and my families experience and start writing to you a little at a time. Go well. FATIMA Date: 14 Oct 2003 Time: 13:38:00 Remote User:
Commentsyour website is very well done...I praise you for your courage and strength ,to fight this horrible disease! may god bless you and may you continue to gain your strength and life back. my boyfriend's brother was recently admitted to the hospital with gbs..so we all pray even more now. god bless and your site is very helpful! Date: 19 Oct 2003 Time: 08:43:39 Remote User:
CommentsHeath, You have been a blessing to me as I read your story. My little girl (3) woke up two weeks ago unable to walk...GBS You have fulfilled a purpose here on earth to give soooooooooooooo many people hope and inspiration. I loved reading the things that helped brighten your days in the ICU. I know I speak for many when I say God is proud, you provide hope, encouragement and a cheerful motivated spirit that puts a smile on the face of even those who feel like life has spun out of control. The best thing you said you received is the importance of each day and every person. Know always your struggles and trials are helping many many people of all ages and their families. Parkersburg, WV GBS foundation Date: 22 Oct 2003 Time: 11:11:02 Remote User:
CommentsI think the website is great!! I was just diagnosed with GBS but my case Thank God was no where near as severe as these cases. I'm just concerned mine is going to get worse. I have had 3 treatments already and have 4 more to go. It seems as though all of these cases happened so quick. I have been week for 5 months now and just this past few weeks got to the point where I could barely walk. Since the 3 treatments received in the hospital I can walk a little better but no where near normal. If you have heard of anyone's progressing this slow please let me know I guess I'm just scared. My e-mail address is www.rdesselles@habitat.com thanks Rebecca Date: 22 Oct 2003 Time: 15:18:43 Remote User:
CommentsI am very thankful for your web site, it has answered a lot of questions we had. And some we never though of. Date: 09 Nov 2003 Time: 17:48:40 Remote User:
CommentsHi Heath, its me Lisa, mother of Tabatha just met someone else with GBS and she wants to talk to someone else who has it. Can you please email her at Wildwoman7243545@yahoo.com Thank you Heath and I hope your doing good. Date: 10 Nov 2003 Time: 13:18:54 Remote User:
CommentsSorry I put wrong address Rdesselles@habitat.com Date: 10 Nov 2003 Time: 13:19:16 Remote User:
CommentsHI I really did like your website because I have my Grandmother that she has GBS and she lives in Guadalajara, Jalisco Mexico and I can't she here know because I live here in Stockton, California she got really skinny and sick but the only thing is that over there they don't have good stuff to make it better is just a matter a time and I was wondering because you were be able to survive do you think there's a possibility she will to? thanks for your great information. my name is Alexandra Lopez from California Date: 05 Dec 2003 Time: 00:12:01 Remote User:
CommentsHi Heath, I was bored at work one day and a co-worker (your wife BU1) suggested that I come visit your site. I found it to be very interesting since I had never heard of the disease. Once I got to the page I just started reading and couldn't stop. 3 hours later after reading just about everything I'm sending you this comment. I am very glad that you are progressing and I hope that you have a full recovery. I am also glad that the Navy is taking care of you (besides the Commander that thought you were faking). Continue to keep your faith in a "Higher Being" and He will continue to bless you....YN2(SCW) Wright Date: 06 Dec 2003 Time: 10:56:24 Remote User:
CommentsHi Heath, Its Tabitha's mom, Lisa. I see that Tabatha is the only one on your tribute page. I love the page but kinda makes me wonder why she's the only one, a know. I hope your Holidays are going good. Mine are fine but I miss Tab so much. Nothing is the same without her. I am having to shop alone this year and its hard. I am so use to her helping me. But I know she is in a better place, right? Heath, I wish you all the best and have a great Christmas. Write me sometimes, I would love to hear from you. Take care now. Date: 23 Dec 2003 Time: 10:03:41 Remote User:
CommentsVery nice!! I'm from SD and went down with GBS on 8/4/01, am still home hoping to recover. Can walk a bit, but can't use my hands. Yours is an amazing story, you had it way worse than I, and yet your recovery is much better. Keep up the excellent work and god bless you. Date: 23 Dec 2003 Time: 10:03:51 Remote User:
CommentsVery nice!! I'm from SD and went down with GBS on 8/4/01, am still home hoping to recover. Can walk a bit, but can't use my hands. Yours is an amazing story, you had it way worse than I, and yet your recovery is much better. Keep up the excellent work and god bless you. Date: 29 Dec 2003 Time: 13:31:28 Remote User:
Commentsthanks for your information, it is great, I am living with GBS for five years, thank you again Date: 06 Jan 2004 Time: 09:19:34 Remote User:
Commentsthanks for your reply and i now read your website with great interest. thanks again colin toonarmy Date: 13 Jan 2004 Time: 15:47:12 Remote User:
CommentsHi. I love your web site. I'm still suffering from GBS myself, I was diagnosed on May 15,2003, was hospitalized for 5 months, now still in Physical Therapy and trying to walk. I was in ICU and on the vent for 2-1/2 months. Our stories are similar. My brother found your website for me and I just got a computer 2 days ago. I can't wait to read more ! Diane Skoba, St. Louis, Mo 01-13-04. Date: 15 Jan 2004 Time: 07:58:44 Remote User:
CommentsGreat site Heath, looking at the photos takes me back.......you have so much wonderful & helpful information. Keep up the great work! Your Fellow GBS Survivor Friend, Dawn~Lynn Bode Date: 16 Jan 2004 Time: 11:25:22 Remote User:
CommentsGreat website. I have chronic inflammatory demyelization polyneuropathy ("CIDP"), also commonly referred to as chronic GBS. I went through much of what you went through, but no vent (thank God). In my case, I had two relapses and ended up back in the hospital for a total of three times over a four month period. Plasmapheresis did it for me, but the final nail in the coffin was the use of chemotherapy to get my immune system to turn off. I was treated by physicians at New York City's Columbia Presbyterian. Please email me with any questions you may have. I wish you all well with this disease. Kevin (Oconnor95@cs.com ) Date: 17 Jan 2004 Time: 22:59:07 Remote User:
CommentsHeath, I found your website through The International GBS site. I live in Texas. I came down with GBS in November of 2001. My Husband is in the Air Force and had been deployed the day I started showing symptoms. For a couple days I thought maybe it was just a terrible virus and so did my Doctor. As the week went by different doctors at the Base clinic sent me out the door saying I was fine. One of them asked me if I was doing this to get my husband home. By then my friend was pushing me in the clinic in a wheelchair because I could no longer walk. It took several visits to the clinic and three ER visits until my Father finally had to fly from NH, where I am from, and take me to the ER and demand they admit me by telling them he was not taking me home. I was in the hospital for a little over a month and fortunately received Plasmapheresis in time to reverse the progress. I was probably not even hours away from needing respiratory assistance. The military sent my husband home to me but our reunion was a shocking one for him. I was laying in bed with tubes in my chest and arms and a video camera monitoring me 24hrs a day. I was eventually discharged about a month later and did out patient therapy and three weeks later I relapsed and had to do another round of treatment. It was another three weeks about in the hospital. It has been a little over two years and I have not had the recovery the doctors said that I would. They said because I was young (21 at the time) I should have 100% recovery. I hit walls with the Military doctors when it comes to asking for help. I feel very alienated when it comes to my problems. I am a stay at home mom and day to day life is a struggle because of fatigue and pain. I am on no medication. The list of Medications was very interesting. Your story was unbelievably inspiring. I have felt very alone in this for a while but now I know I am not! Thank you for sharing your story! Keep up your wonderful recovery and God Bless!!! ~Kim kjwheeler98@msn.com ps. Do you have any info on support groups? Date: 08 Feb 2004 Time: 04:44:19 Remote User:
CommentsWow. Heath, I just found your website from a link in your signature on the board at www.myoldtruck.com I am truly amazed after reading your story that you're doing so much these days. Having an old truck myself, I know lots of things aren't real easy to do even without having to deal with recovering from such a drastic ordeal. It makes me realize how fortunate most people are, although after getting an idea of how positive you are able to remain throughout this, I think you have been able to learn and grow more than most people ever will. I'm a recovering alcoholic - 8 years now, so I know how difficult it can be to remain positive and strong when things seem impossible. Your passion is truly inspiring. Any time you want to vacation in the Miami area, you've got a host and a free ride in my '68 pickup! Jake Kooser - Shaky Jake at www.myoldtruck.com jake@donttrythisathome.org Date: 14 Mar 2004 Time: 10:29:19 Remote User:
CommentsSurvivor48 better known to me as Scott, This is a great service you are providing to people seeking any information regarding GBS/CIDP. As you know my husband Frank was vaccinated with the Flu Vaccine in December 0f 2000. 8-10 days later he was stumbling and falling and said he felt like his feet were in buckets of icy slush. He just kept getting worse and he refused to go to the hospital until New Years Day 2001 where he was quickly diagnosed with GBS. He was given IVIG immediately that night and for the next 4 days. He went on to a rehab hospital for intensive physical and occupational therapy to maintain and rebuild his muscles that were now atrophying. Six months later when he just kept getting worse with relapses, he was sent to a Neuromuscular Dr. who specializes in GBS/CIDP, who then diagnosed Frank with CIDP. Frank had to wear MAFO'S (Molded just for him, hard plastic braces). He went into the hospital and rehab hospital in a wheelchair, came home with a walker, which he used for 11/2 years. He now uses a cane and can drive today. I met Survivor48 on the GBS/CIDP International Forums. I have read his story and I often wonder how anyone can survive this rare syndrome, when you see what they go through on a daily basis in doing the things we take for granted, like brushing your teeth. To A GBS/CIDP patient it's like being an infant and having to learn how to do the smallest things for yourself. Thank You Again Scott for your story, it is powerful Brandy and Frank Date: 14 Mar 2004 Time: 10:39:30 Remote User:
CommentsJust wanted to say, Thank You to All My GBS/CIDP Family that I have met over the past 3 1/2 years at the GBS/CIDP International Website. I salute all of you, for all that you do to help others in need, while dealing with your own ups and downs of these 2 very rare syndromes. You are all truly Heroes to me. Brandy
Date: 28 Apr 2004 Time: 19:34:09 Remote User: CommentsI found this website to be very informative. I am graduating this May in Physical Therapy! I am doing my in service at my final clinical on Guillain-Barre and I am using some of your information! I want to give the other therapists I am presenting a visual and therefore I am using your photos and personal story! I wish you the best of luck in the future! Congrats on your recovery from such a horrible syndrome! Nicole Stewart
CommentsI'm very glad to hear about your progress. This must truly be a happy time for you to be able to get out a do some hunting. Congratulations on your physical progress and on the nice turkey. Bless you, Boogity from Hag's House
CommentsGreat work.
CommentsHeath, As one GBS survivor to another, I am so very, very proud of you!!!! What a wonderful job you have done with your website!! I have tears of happiness streaming down my face for you and how well you are doing. I was diagnosed ten months before you, but the length of time we spent in hospital and trached are very similar. Please keep up the good fight and know that you are not alone....... with thanks, Christine
CommentsVery helpful. I had GBS in 97 and up until now had not visited any related sites. I was severely affected as well and your early stages nearly mirrored mine. I did not have the sensation of burning up or high fever but had incredible back pain which also required an air mattress. The back pain made the ordeal almost unbearable. I think I would have been a better dispositioned patient had I not had to deal with this pain. Paralysis yes - pain no. I therefore get the idea you also dealt with some soreness if not outright pain? KELSO347Šyahoo.com
CommentsI really, appreciate your site. I am in a feeling of hopelessness for my grandmother (and myself) who has GBS. She has been on a ventilator for 4 months, and the daily visits are very draining and full of strong emotions for my family. To make her comfortable takes much patience, with pillows, and temperature and sheets, and plenty of oral suctioning and its overwhelming. And of course I just feel that something more could help her, accu-puncture, massages, something...well i could ramble forever, it is a ll so overwhelming, but this site is great, good luck to you and your family and thank you for sharing the stories of courage and recovery, I will share them with my grandmother. Sincerely, Kristin Hoffman Glendora California.
CommentsI am 51 y/o male, I have been a paramedic for 21 years. I never even heard of GBS till I got it. It is devistating to me to have to stay at home all the time now because of weakness and pain. Thank you for this site, I have learned much. Charles Scott Las Vegas
CommentsI am 51 y/o male, I have been a paramedic for 21 years. I never even heard of GBS till I got it. It is devistating to me to have to stay at home all the time now because of weakness and pain. Thank you for this site, I have learned much. Charles Scott Las Vegas
Commentshi margie here looking for help on how to print out storys without losing the end of each sentence email me @ margielenny@yahoo.com
Commentsheath, what a wonderful website! my brother got lymphoma and then gbs in 2002. he went through a horrible struggle like you. he is fighting back and can walk with a walker and trying with a cane now! god bless all yopu who have been dealt this disease, your strenghth makes me feelm there is nothing i cant handle. i hope my brother does as well as you have, i will tell him about your website, he could use a friend with this in common.if any one knows what could help the painful sensations he still feels in his chest please email me- cherylw@alleganyinternet.net ps.-he is on neurontin, dilantin, vitamins, ect. GOOD LUCK HEATH!
CommentsMy son 26 years is suffering from the same syndrome. He was in hospital on ventilator for 3 months and after that Drs. discharged him. He is at home but unable to move even his finger, I am totally broken up and shatterd. Don't know what to do. Need some suggestions for me as well as my son's life.
CommentsThank you, Thank you, Thank you. This is the site I have hoped would be out there to help me to understand GPS. You responded to a message I put on the GBSFI site. My friend has the same extreme kind of GBS you have. Although I have not seen her yet, she has a friend that has said will keep me updated. Your site is articulate, well designed, and the most informative I have yet to find. I will be back to follow your progress and see if more info has been added. I also will share your site to her family and friends. I wish you continued progress, and happiness in your new marriage. Thank you...Anita p.s. If possible, would like to hear in your parents words what all this was like for them. A
Commentsbest regards feroze seedat hows the studies progressing
CommentsHi there, I am a second year nursing student doing an assignment on GBS. Your website helped me heaps to complete the paper it was really comprehensive and not only covered the disease but also the recovery period. You've come so far and done so well it's just amazing to see. Thanks again, Amanda (In Australia) p.s. found your page with google
CommentsHeath, I hope all is progressing well for you. I wanted to tell you that after two weeks of pestering any one that would listen, I have been put on the "family list" to see my friend this coming weekend (8/1) The friend she has there has assured me that she wants to see me even tho they can only communicate by translating her eye blinks. I am trying find a CD or Cassette player so I can take or send music and audio selections I know she likes. We have always got a kick out of the "Maxine" greeting cards. I have downloaded about 300 of them (who knew there were that many) and will be printing up a stack to take and put on her walls in her room. I have you and the gbsfi to thank for encouraging me and helping me to understand this monster that holds captive the people we love. Yours sincerely, honestly and gratefully, Anita
CommentsWe thank God for your website. We have an eleven year old boy who got this monster in February, 2004 and has been totally paralyzed since the end of March. The doctors here don't seem to know what to do for or with him. He is severely "locked up" (hands and toes contracted and spasticity in his legs that draw his knees up to his chin. We were able to keep him off a ventilator and we feed him and move him. He has not yet been incontinent, but he is "stuck" in this hell. He is not on any medication now, but they had him on all kinds of anti-anxiety medications that only made him so drowsy he couldn't help with his physical therapy. One set of doctors insisted he had somatoform or conversion disorder and wanted us to put him in a physciatric nursing home. Your site has let us know that there are others going thru this same thing and there is hope.
CommentsHi H! Let me say again how proud I am of you for this endeavor! I think it's awesome that you have found a way to help others going through the same experience that you and your family had to struggle through! You are an AWESOME example of a great outcome! However, I still think a pic of the BIG day including D would be wonderful :) K
CommentsHeath, I have been to see my friend. I don't know how to continue. It was THE most ...what can I say. My heart or my voice can never express the feeling I had seeing her. I don't understand how her family can be so awful. I need advice, what should I do. Her Dr. told her step dad that she has survived longer with GBS than any other person on record in that hosp. But when I call, the nursing staff says she is doing better. I need to know how to read between the lines I guess. When I asked her step dad what he thought the prognosis was and he did not sound like he thought she was going to make it. I refuse to give up on her. But, (I hate the but) what quality of life could she have? ICU going on 4 months? PLEASE respond. I don't want her to give up. Thank you, Anita
CommentsAs a small independent documentary producer in Sweden (working with this topic for the moment), you have given me your story as a comparison to my friends...Very nice and rich!!! :) Take care, Maria
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