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One of the best ways I can recommend you help someone with GBS is to learn as much as you can about it. The are numerous good books on GBS out there, as well as lots of information on the world wide web. If you haven't already been to the Guillain-Barre Syndrome Foundation International yet I recommend that you do. The Discussion Forums available there are a terrific source of knowledge which are absolutely free to use. Before you can make "posts" in the discussion groups you will have to go through a simple registration process. The registration process is quick and simple to do. If you do not already see a topic posting for the question you want answered you can create a new posting to address the question to the other members.
Because I was completely paralyzed boredom was an every day occurrence for me. I loved movies and music before I fell ill with GBS so we decided to try and occupy my time that way. We eventually had a TV and VCR brought in that was excellent for helping to occupy my time. A Radio and CD player was also was a wonderful addition.
I've compiled a few audio books I am willing to loan out. Check out what I've got for loan.
While I laid in a bed on the vent unable to move my body quickly deteriorated and the remaining muscles began to atrophy. The muscles that weren't being used tightened up and severely limited my range of motion. (When I came off the vent and started rehab I couldn't get my hand to my mouth or lift my arm far enough to apply stick deodorant. An aggressive program on the part of physical and occupational therapists can help to prevent this. You can also do limited amounts of this to help. (IV's and other support equipment, as well as the GBS'ers pain, may prevent many things, ask the Therapists how you can help) I had my hands ranged by nearly all my visitors and I feel it helps tremendously. Speak with the Physical and Occupational Therapists and see if they will show you what you can do to help.
Because I was on a vent it was very difficult to communicate with my doctors and nurses. While some would take the time to guess at what I needed until we got the problem resolved or to use some form of a spelling system to see what I needed, many did not have the patience or time to really “talk” with me. I had my parents to help me. They would write down my symptoms and complaints and then discussed them with the nursing staff and doctors. On occasion, they had to intervene by going to the nursing manager about problems I was having with nurses in order to get the situation resolved.
I had some serious problems with a few nurses and Donna (evening shift RN) suggested that since no one on the MICU floor had seen me any way but on a vent and paralyzed my parents should bring in pictures of me. Seeing my pictures might help those who cared for me to see me more as a person and hopefully change their attitude some. Mom had a picture blown up of me standing next to my pride and joy ( 67 Chevy K10 !!) and posted it in my room. Having that picture hanging there did my spirit good, too. Soon other pictures and cards made their way to the wall in front of my bed where I could easily see them. I am here to tell you it helped lift my spirits.
Just seeing someone walk through my door was a wonderful comfort to me. I can remember sitting and staring at out into the hallway waiting for someone to walk towards my room that I recognized. Even just having someone sitting next to my bed as they sat reading a book or thumbing through a magazine was comforting.
I had a few friends that came to see me weekly. They worked it out amongst themselves and came on different days. Wendy came in the evening and brought a newly released movie for me to watch with her. I really enjoyed her visits and her smiles. It was during one of her visits that we had the first good sign I was beginning to recovering. Wendy discovered I was just barely able to move the index finger on my right hand.
Karen and Laurie most normally showed up together and often had something planned to help brighten my day. These two did many things to brighten my day but there are two things they did I will never forget. The first was showing up at the Kansas City VA Hospital wearing t-shirts with the design of a woman wearing a very small bikini, huge blue and purple wigs, enormous glue on eye lashes, and big press on finger nails. It was QUITE the get up. My nurse later came in and shared with me that when she had looked up and saw Karen and Laurie walking into my room the first thing she thought was that some one had sent two call girls to my room. Karen and Laurie had asked me if I could believe that the person at the drive through window at McDonalds had looked at them in disbelief and asked if they always dressed that way. Here is the picture as a thumbnail.
The second big thing the girls did for me happened on my birthday and occurred on the rehab floor of the Minneapolis VA Hospital. I was sitting in my bed watching TV and mom was sitting in a chair next to me reading a book when one of the nurses came to the door and said, “Mrs. Gilbert, may I speak with you please?” Mom got up and walked out the door to where I was just able to make out voices but not understand what was being said. Then I heard mom say, “Well I don’t care.” and then walked in my singing telegram. This woman had a hand full of balloons in each hand and was wearing a very small white nurse’s outfit and some very tall high heels. As she started to tell her jokes and sing my happy birthday songs I began to get a congregation of Vets around my door watching my singing telegram. I could hear a groan of protest from them as one of the nurses closed the door to my room. After she told her last joke and left I quickly became the talk of the floor. Not only had the singing telegram made my day, but the day of many of the other Vets on my floor.
I had a well established routine regarding my care at the Kansas City VA. My teeth were brushed and was given a bed bath every night. You might inquire to make sure this happens. Most ICU are very good about making sure these needs are met. Once transferred to a rehab floor it is important that you work with the nursing staff to develop a daily routine and help get the GBS patient back to a normal schedule. I went through a lot of frustration when I first got to the rehab floor because I felt my needs were not being met. I just assumed they would be taken care of just like they were in the ICU. Eventually a Rehab nurse sat down with me and helped me to develop a plan for my care. We worked out when and how i would take my meals, when I would be given a shower, when my teeth would be brushed, when I would use the toilet, and any other aspect of daily living I wanted to get back on a routine. This plan was added to my chart so that any nurse who might not be familiar with me would know what I needed. You can speak with the nursing staff to see if they won't do something similar.
One very common problem with GBS is depression. A person with GBS can have depression for a variety of reasons. These reasons could be for the loss of independence, feelings about the loss of competence, loss of self-esteem due to weakness or physical attraction, and most commonly from feelings of placeless ness. Feelings of placeless ness can be caused by losing ones social position, job, or place in the family or community.
Many people with GBS also have feelings of isolation. Fatigue may make evening socializing impossible. It is also difficult talking to others about GBS, because most people have little or no frame of reference about GBS, as opposed to something like MS. Because people with GBS look healthy, many people report that others do not believe that there is anything wrong with them.
Fortunately, there are treatments for depression. Talking to a psychologist or psychiatrist may help deal with the underlying issues that cause depression. Increased exercise can raise endorphin levels, which counteracts depression. And finally, doctors can prescribe anti-depressant drugs.
Range of motion is such an important thing while you are hospitalized, especially during extended stays in the hospital. During the 4 months that I was on a vent I received very limited range of motion from therapists and ended up paying the piper when I left to go to the rehab hospital in Minneapolis. While I was eventually able to get back to my original range of motion, it took well over a year to get there.
As I lay in bed unable to move my muscles began to deteriorate. Within 6 weeks I had dropped nearly 50 pounds of what used to be muscle, leaving me quite literally skin and bones. The muscles that were left quickly began to atrophy. (I found an interesting article that suggests muscle atrophy could be curbed through the use of anabolic steroids, read it here. It might be worth discussing with a physician.)
While my muscles atrophied to nothing, they also began to tighten, which quickly began to limit my range of motion in all of my limbs. When I left the Kansas City VA my nurses were unable to lift either arm far enough off the bed to be able to apply roll-on deodorant or roll my hand palm up. Having my leg lifted off the bed also proved to be just as difficult. I was locked up TIGHT.
The therapy I underwent to get my range of motion back was painful to the point they began to give me a narcotic (Percocet) before therapy so I could make it through my session. It is my own personal opinion that had I received more range of motion in Kansas City I wouldn’t have had nearly as difficult a time with range of motion when I arrived at the rehab floor of the Minneapolis VA.
More than 2 years after onset, I have learned a few lessons about pain and using Neurontin to manage it. The pain I am referring to can best be described as "tingly".
My pain level is changing almost every few weeks. While my activity level and rest contribute to the level of pain, they are not the determining factors.
Some weeks a couple 300 MG tablets of Neurontin are capable of keeping me comfortable. On other weeks 600-900 MG more than my prescribed dose is needed to allow me to function. Exactly why the difference is unclear to me.
I did speak with my rehab Dr. briefly about the increases in my pain level. She told me that perhaps it had something to do with re-growth of myelin causing new activity in a previously dormant nerve.
During those weeks when my pain is elevated I found the Neurontin is most effective when taken every 4 hours. If your current prescription is not written this way ask your doctor to make the change.
The only side effect I have noticed was drowsiness. This occurred after going back on Neurontin after a period of not taking any. The drowsiness passed after a few weeks of taking it again.
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After beginning my recovery at home in Missouri I began to get very cold feet and calves, especially during fall and winter months. I had an electric heating pad but had to depend on someone to plug it into the wall for me because my grip strength was next to nothing. Mom found me a solution to my problem.
Mom brought me a bag that she had filled with 4 pounds of loose field corn that could be heated in a microwave. (The heated corn bag retains the heat for a surprisingly long time.) Mom setup a microwave on a small table that I was able to get to and operate with the limited function in my hands so I could heat the bag when ever my feet or calves got cold.
Mom makes them herself and buys her corn in 50 pound bags at a local feed store. She sent me instructions for making them that you can find below.
Cut 2 pieces of pillow ticking 9"x13". Turn right sides together (inside out), sew along all four edges leaving and inch or two open. Turn bag right side out and fill with 4# of whole corn. After the corn is in sew up the remaining hole; I do it by hand.
Pillow case. Cut 2 10"x17" pieces from any material you like. Sew one inch hem in the 10 inch side of both pieces. With right sides together, sew along 3 edges. Turn right side out.
This is very adjustable. You can use up scraps of material you have around the house. I had a bigger one 5 lbs. of corn, but found I liked the smaller one better. Thanks, mom!
Each microwave is different, but for me I micro wave my 4# corn bag for 4 minutes if it is at room temperature. If it is already warm I reheat it for only 2-3 minutes. If you over heat it you will be able to detect a burnt smell.
When you heat your corn bag for the first time you may notice condensation inside your microwave and a peculiar smell. This is normal as the corn has absorbed some moisture from the air around it. As you continue to heat your corn bag the moisture and smell will disappear. If you have any questions just let me know.
Please be careful when you use your corn bag. If you over heat your corn bag and then place it directly on your skin you can get burnt!
Try heating your corn bag and placing it in your bed under the covers so you have a nice warm bed at bed time. Just slip the warm corn bag between the sheets 15 minutes before you plan to go to bed.
This list of doctors has been compiled from the input of people who've been treated fro GBS. I've not dealt with these doctors, nor do I have any information about them beyond what you see printed here. These list is only intended as a starting point for location a doctor who has experience in dealing with GBS. Please read my disclaimer!!
Mayo clinic in Scottsdale.
Dr. Levin in Phoenix a neuro who did his doctorate study on GBS
In Sedona Dr. Cowan he understands GBS.
Prescott ask the group there, there are 8 people with it in that town current or recovered
UCLA: Dr. Michael Graves is highly regarded and is a member of the advisory board of the GBSFI. I found him to be caring and knowledgeable.
Los Angles area doctor with GBS experience is Dr Emilio Cruz. He was really good... his # (818) 842-8177.
National Jewish Medical and Research Center in Denver, CO is the best respiratory hospital in the U.S. toll free service called LUNGLINE...phone number is 800-222-LUNG.
therapy center two in Denver - Kindred and Craig.
Christiana Hospital in Newark, DE. They have a great team of neurologists. Newark is probably 45 minutes away.
Mayo Clinic in Jacksonville.
Dr. Stephen Block 1411 No Flagler Dr, W Palm beach
University of Miami, School of Medicine, Department of Neurology. Dr. Bradley[He's the Chief Neurologist, teaches medical students, writes medical text and periodicals, and is heavy into ALS research] , if not then on of his associates Dr. Mauricio Concha with Neurological Associates in Sarasota. he is moving [locally?]... later by another, I was on a heart monitor and close to a respirator. I have nothing but wonderful things to say about Dr. Concha!! Last I heard, he was in Sarasota, FL
Manley Kilgore - Baptist Hospital in Jacksonville 904-396-2400. Rehab doc Howard Weiss 904-296-9939. He is also a resident at Brooks Rehab Hospital. They treat every GBS patient in Jax and he is also very willing to help.
Hospital in Atlanta "The Shepherd Center". Excellent facility that treats on average 50 cases of GBS a year. It is a catastrophic care facility that deals primarily with spinal chord injuries, MS, GBS etc, http://www.shepherd.org
Emory University in Atlanta, Ga. The head neuro when I was there ('99) was Dr. Owen Samuelson, but he had several sharp assistants and interns. A young resident actually diagnosed me.
Barry Arnason, MD University of Chicago. Chicago, IL 773.702.6386
Either the University of Kentucky Hospital at Lexington or the University of Louisville Hospital for a referral neurologist experienced in GBS located in your area
College of Medicine UK Chandler Medical Center
University of Kentucky Lexington, KY 40536-0084
Phone: (859) 323-6582 http://www.mc.uky.edu/medicine
The Massachusetts General Hospital in Boston is one of the leading Hospitals in the US in Neurology and GBS.
The neurology group at St. Elizabeth's hospital in Boston specializes in GBS. They are the national referral center for GBS.
Allan H. Ropper, MD Chief Division of Neurology Caritas St. Elizabeth's Medical Center
736 Cambridge St. St. Joseph's Hall 4th Floor Boston, MA 02135 Phone: 617-789-3300 Fax: 617-789-5177
Specialties: Critical Care Medicine, Guillain Barre Syndrome, Multiple Sclerosis, Neurology, Stroke
Baltimore - Johns Hopkins. Dr. John Griffin a member of GBSFI med staff. v good doctor. The number is 410-955-2227. Ask for Denise, his wonderful assistant.
good GBS rehab Braintree rehab center
*NOT RECOMMENDED* Dr. Richard A. Lewis, M.D. Professor and Associate Chairman Department of Neurology, Wayne State University School of Medicine.
U of M Neuro-Muscular clinic in Ann Arbor Michigan She, Dr. Feldman ordered an EMG & recommended immediate IVIG. We were told "you have come to the Center for GBS. We have been studying this disease for over 20 years and consistently explore the latest advancements in it's treatment and recovery". Dr. Parry is at u of m, world renown. Our Primary care Doctor is Dr. Clark Headrick and the Rehab Doctor is Dr. Dara Headrick, husband & wife both GBS experts.
Bon Secours Hospital located in Grosse Pointe (313) 343-1000, I went to their ER Nov. 21, 2002 w/numb hands & feet, after countless tests they called in a Neurologist: Dr. Policherla (313) 882-8600 he had experience w/GBS before me & ran a lumbar puncture & nerve conduction test & determined it was in fact GBS
Mayo in Rochester, Minn. with Dr. P.J. Dyck [the elder], MD
Leland J.C. Scott, MD, PH.D The Minneapolis Clinic Of Neurology, LTD. Oak Ridge East Professional Building
675 East Nicollet Boulevard, Suite 100 Burnsville, MN 55337 (952) 435-8516.
Mayo in Rochester, MN. I was seen by Dr. Christopher J. Klein, a neurologist and Dr. Luis Porrata, a hemotologist.
Leland J.C. Scott, MD, PH.D The Minneapolis Clinic Of Neurology, LTD. Oak Ridge East Professional Building
675 East Nicollet Boulevard, Suite 100 Burnsville, MN 55337 (952) 435-8516 Prior Lake, MN
Dr. David Peeples at Mo. Baptist Medical Center. That’s where I work also. he diagnosed me with GBS right away.
Dr. Tahmoush, he is good. He has an office in St. Francis Hospital in Trenton.
moved to Kindred in Albuquerque [for rehab] after IVIG and paretheses at St Vincent's in Santa Fe, NM
therapy center Albuquerque - Kindred (sp?)
Manhattan - Dr. Norman Latov, New York Presbyterian Hospital. He is very difficult to get appt. with though. I was also impressed by Dr. Dale Lange, very highly qualified Mount Sinai Medical Center
I wanted to say in addition to Dr. Latov (in NYC) that his partner Dr. Howard Sander is also wonderful.
Dr. Latov and Dr. Sander are both part of the Peripheral Neuropathy Department at Cornell-- here's the URL:
Dr Weinberg in Manhattan. he is with NYU. He's great. I've been using him for 8 years now. He's at 650 1st Ave.
NOT recommended - Cleveland Clinic
Dr. Weisman with the Neurological Associates of Pittsburgh. He has colleagues that specialize just in GBS. Pittsburgh has a number of doctors that are very knowledgeable with GBS. hospitals - Presbyterian, Mercy or UPMC.
UNC- Chapel Hill, Dr. Colin Hall. After a single evaluation, he knew what it was
Spartanburg SC Her name is Dr. Kooistra and she is with Carolina Neurology. And partner Dr. Nichols.
Mike Yuan, MD. Neurology & Pain Management Bellaire Clinic, 9110 Bellaire
Boulevard, Suite H, Houston, TX 77036, Phone: 713-490-1493
4703 Brookview Drive, Sugar Land, TX 77479-3073
Dallas: one of the world's most renowned GBS Immunologists, Richard Wasserman, M.D. Fax: 972-566-8837
Dr. Pinky Tiwari. Her office is in St Luke’s Medical Towers. She has privileges at the hospital.
John D. Rossi 920 Medical Plaza Dr. Suite 470 the Woodlands [north Houston, near bush int'l airport], TX 77380
suburban hospital (West Houston Hospital, Dr. Gaer NOT recommended) by someone here.
Dr. Frank specializes is GBS, but you have to understand there are so few cases and so much unknown and limited resources for treatment
Seattle I see Dr. Maria Reyes (pronounced Ray-ez) at Good Sam. She's a physiatrist, doctor of rehab medicine. Real sharp gal. She can provide anything any neurologist can. She works in the trenches at the hospital and the rehab department
Dr. Mark Lanser at Riverview clinic Janesville, WI
Dr. G. Stotts 1919 riverside dr., suite 204, Ottawa, Ontario. 613-739-9175
British Columbia Vancouver General Hospital Dr. Gillian Gibson MD, FRCPC (Director Neuromuscular Diseases Unit, Division of Neurology) is awesome! Tell your neuro to consult with her... (604) 875-4247.
Dr. Stephen Clarke from St. Paul's Hospital - he is quite familiar with GBS.
I am enclosing the phone number for the Neuromuscular Centre in London[canada?]. They are a university hospital and teaching centre. They are fabulous there. 519 685 8500 ext 33041
Dr Hahn in London Ontario, long appt time w her.
*NOT recommended - I live in southern Ontario. I saw a neurologist in Kitchener.*
UK wherever Dr. R.A.C Hughes, MD is in the UK (Check with the UK GBS/CIDP internet site). BTW Dr. Hiughes is a consultant at Guy's Hospital in London
UK Prof. Richard Anthony Cranmer Hughes MA., MD.. Cantab. F.R.C.P.
Dept Neurology. Guys Hospital. London SE1 9RT
020 7955 4500
Hugh John Willison. PhD. F.R.C.P.
Dept Neurology. Univ. Glasgow. Southern General Hospital. Glasgow. G51 4TF
0141 201 1100
MB London 1980
John Boyle Winer MD. F.R.C.P.
Dept. neurology. Queen Elizabeth Hospital. Edgebaston. Birmingham. B15 2TH
0121 472 1311
MB LONDON 1978
NETHERLANDS Rotterdam - Pieter van Doorn, GBSFI med staff
This page was last modified: July 26, 2005