what is this forum really about?
AnonymousAugust 3, 2010 at 8:24 pm
I want to know if i ask a question will I get an honest answer or some sugar coated answer so I don’t get scared? I want a truthful answer even if it does scare the dickens out of me. Where else would i be able to attain answers but from people who have had GBS. I am desperate when i do ask questions because I love my sister with all my heart and i want to be prepared for anything that might happen or things that i should watch out for.
I do have one question right now, some of you have had GBS for the same amount of time my sister has had it and I want to know how you can type and answer my questions? Is my sister an exception and worse or what? Should my sister be farther ahead than what she is? She has been in the hospital and rehab centers since March 10th, and she had the set back when she had to have her colon removed but she has gotten past that and is doing well she has excepted it she even jokes about it! But she still cannot control her hands or her legs or her tongue or lips. She is talking but it is hard to understand her, but i am getting the hang of it. I guess I am just depressed because she doesn’t seem to be getting better. Maybe her rehab facility is not that good I do not know. Also her insurance has run out and her treatments have to be paid by her and her husband. The Dr says she’s got to stay in the hospital for another 2 weeks because of the surgery.
AnonymousAugust 3, 2010 at 11:04 pm
Your getting honest answers. To sugar coat answers to your questions would not help you or others asking questions. I do understand your desperation as I watched my loved ones go through the same feelings of desperation.
GBS can be mild to severe the way it attacts us. Some may make fast recovery while others recover slowly. Some may recover 100% while others recover 75 or 85%. Some of us like myself have been so slow to recover after 2 1/2 years that I am still in the wheel chair.
With the exception of weakness and light tingling in the fingers and forearms I could move the arms, head and neck.
We can’t say if your sister should be farther ahead than what she is as everyone recovers differently.
Wish I could give you answers that would help the feelings of desperation you have.
Look back to where your sister was on March 10, compared to where she is now. Even the smallest improvements she has made during that time is encouragement toward recovery.
AnonymousAugust 4, 2010 at 12:30 am
I understand your frustration. i am new to “Club GBS/CIDP” I was admitted to the ER on February 25th, which was my birthday. you can read my timeline through the link I pasted.
I having been doing great until tonight, the Pain is extreme and nothing is cutting it tonight.
This is a very frustrating disease.
AnonymousAugust 4, 2010 at 7:36 am
Diane’s Sister, first I want to say God Bless you for the loving care you are showing your sister. GBS/CIDP is such a strange disease that the unknowns are the worst part. Each of us are affected in different ways. Some are lightly struck, others heavier. With this forum we try to spread our experience with all who have questions. Each person suffers in their own way. I had a medium case, but never to the wheel chair phase. I can walk with a walker, type or hunt and peck as the case may be with spellcheck assistance. It is slow and causes pain a lot of the time, but that is part of this that we have to learn to deal with. Make sure you log onto the main GBS/CIDP Foundation International web and sign up. They will also assist in answers to questions and send information to help you understand. We’ll keep Diane in our prayers.
AnonymousAugust 4, 2010 at 8:28 am
My heart goes out to you.
GBS/CIDP is very frustrating, can affect everyone differently and recovery varies in the extreme. I haven’t yet had a chance to read the other posts, but I wanted to know if your sister is or has received plasma exchange or IVIG? Are physical, occupational and speech therapists coming by to work with her?
I’m sure I’ll think of more questions (yep, that’s me….the question lady) to ask later. Know that you and Diane are in my prayers. Stay strong. Don’t let GBS get the best of either of you.
AnonymousAugust 4, 2010 at 8:33 am
Thank you all. I know you understand how frustrating this is. And I do not mean for myself, I just cannot even fathom how my sister feels. I made her a t shirt that says “ONE TUFF CHICK” And she loved it, she said she cannot wait to wear it. Her and her husbands insurance has run out, she does not know this, her husband doesn’t want her to know because that would bring her down. I really do not know what to do. She just started collecting social security, and she does not qualify for disability because she has not worked in the past 10 years. I want what best for her, does anyone know of maybe foundations that could help, I don’t want them to just send her home and say “OH WELL” She lives 3 hours from me and all her family. I work full time and take care of our father who is 86 years old and has Parkinson’s, I have been going to see her on Saturdays because it is only 1 and a half hour away but if they send her home I will not be able to do that. I wish her husband would bring her here so we could all help with her. But he won”t he says “who is going to take care of my house” Well if he brings my sister home i don’t think he realizes what it’s going to do to his time….He will not be able to leave her alone at all, not in the condition she is in.
Thank you and God Bless to all, and thank you for all your thoughts and prayers.
Has anyone heard how President Johnson’s daughter is doing? She was diagnosed about 2 weeks after my sister. She is at Mayo Clinic
AnonymousAugust 4, 2010 at 9:28 am
All of your feelings and questions are normal; we’ve all had them, to some degree or other. Everything will work itself out as time goes on. Your sister’s husband will realize the extent of the damage to your sister once he sees her daily. She is making good progress from the condition she was in before, and she will continue to heal, in time. There is a lot of adjustment for everyone concerned. The main thing is to keep hoping, and to see all things through.
At times, life throws things at us which cause setbacks: financially, physically, emotionally. GBS-CIDP is a serious setback, but it is possible to overcome the damaging effects as far as each person’s healing potential.
Learn all you can about this condition, because knowledge will give you insight and help you to help her.
For me, I had (and still have in a lesser degree) many symptoms of stroke: vision & hearing changes, speech difficulty, reading & writing difficulties, memory problems, clumsiness with my hands, dropping things, dyslexia. (As I write this, I am making mistakes on almost every word, but correcting as I go.) I’ve improved a lot in the past 2 3/4 years, but I’ve had to re-train my brain and body to do all the things I once did easily. This is what is required in the rehab process, and it cannot be rushed or the body & mind will actually be overworked and suffer more pain and relapse. We do what we can with what we have left, and hope and work for better days.
React in calmness and patience, because we are in this for the long haul.
AnonymousAugust 4, 2010 at 10:22 am
[QUOTE=diane’s sister] She just started collecting social security, and she does not qualify for disability because she has not worked in the past 10 years. I want what best for her, does anyone know of maybe foundations that could help, [/QUOTE]
I honestly don’t see how they can discharge your sister when she still requires hospitalization. When I was diagnosed with GBS, I received a visit from an on staff social worker and one of the things they discussed were insurance/payment options. Please ask your brother in law to request a meeting with a social worker or, in the alternative, you can call and talk to one.
AnonymousAugust 4, 2010 at 7:10 pm
Thank you to all. It is very deceiving for me when i see you answer my questions I had no idea that it is hard for you to type the answers, no dis concern it is good to know. You have been very helpful. My brother in law has been talking to the social worker at the hospital and they more or less told him to take one day at a time. I just cannot see them discharging my sister in the condition that she is in, but I will do what they say take one day at a time.
Again thank you soooooo much
God bless and you are all in my thoughts and prayers
AnonymousAugust 4, 2010 at 9:17 pm
But, being patients, and also victims of the ever so many ‘systems’ that make us jump thru hoops to get diagnosed [even] or treated [if lucky] It’s all one heck of a battle….and all up hill!
Many try to share care and fears and questions, there are limits on such a forum? There are others tho, not as active where more can be said and shared but then there are more [such as docs] who could read it.
Therefore? Many tippy toe around here and at other resources because of that possiblity that it is NOT a CLOSED forum! There’s a lot of legal stuff that can and does go with it? But no, mind… in this case? As in most cases, docs NEVER EVER say IT’s DEFINITELY This over THAT! They never, ever give you ‘odds’ for improvement or against, nor do they never, ever give you a potential diagnostic set of ‘odds’ for improvement or not!
I’ve never had a doc tell me I’ve got X% odds of getting better.. only wishy-washy pablum that it might or mite not…. Further? Treatments w/various meds and other therapies? The odds are pretty vague there too.
I’ve got CIDP, which has in the past been called a ‘chronic GBS’? And I’ve got to tell you that the only way treatments can be determined and then treated is thru good diagnosis! Insurance or not? It can and does mean the difference between living in a rehab center on life support [IF it gets that bad?] or not. Key to this all is the ultimate cost of LIFE and the quality of LIFE that might be possible, tho unable to pay for it.
What you need right now? Is to find a doctor who can be an advocate for your sister. To do that? You mite have to get access to her medical records [if allowed] and become HER ADVOCATE. That will get you diagnosis. Other hurdles are access to disability and treatments – simultaneously I’m guessing. Those things for us who are immune compromised find it hard enough to do things for a couple of hours? But doing the whole disability shebang can be a fast and furious full time job for a few months. Are you up to it?
Keep asking questions, maybe someone more wise than I can answer the disability aspects [I’ve been chicken so far? But must address them soon myself.]. There are answers out there? For this sort of problem, they’re likely not simple? But definitely doable! Keep faith and hope that doing what you can can get you where you need to be! Hugs !!!!!!!!!!!!
AnonymousAugust 6, 2010 at 8:03 am
i wish u and ur sister the best of luck, i am 4 years post gbs and still and recovering, i use my wheelchair for long distances but have been doing alot more independent walking. I was in hospital for 4 months then anther 4 months of in patient rehab, to learn to feed myself, brush my teeth, shower, get dressed…. ur sister has a long road ahead of her, and some get better alot faster then others. u’ll see progress and setbacks, but u have to keep in mind any day she is awake is a good one. stay positive and keep a smile on for u and ur sister:)
AnonymousAugust 9, 2010 at 10:20 pm
Dear Dianes’s sister,
The sugar coated version is: Your sister will recover 100%.
The non sugar coated version: Everyone is different and no one knows how much your sister will recover or how long it will take. GBS follows no rules and has no time table. Some people recover close to 100%, some people must use a cane and others are left in wheelchairs. I knew an elderly woman who never got off the respirator.
You must be patient and allow your sister to heal. God willing, she will one day be able to resume a normal life.
I hope you do not find this answer harsh, but I think you want the truth.
AnonymousAugust 12, 2010 at 8:16 pm
Well, I wont sugar coat it for you. Look at my siggie below. I had GBS bad, real bad. It was hell and awful and the worst thing you can imagine, ever. I know youre scared, your sister is more scared. PM me anytime you want. I have been on this message board for 2 years and these are some of the best people you’ll ever “meet”
August 20, 2010 at 11:37 am
Diane’s sister, I can’t add anymore than what’s already been said. Everyone’s experiences and recovery is different. Continue being there for her and looking into any and all options that may be available to her.
One more thing: be sure to take time out for yourself as well! Eat well and get plenty of rest. 🙂
You must be logged in to reply to this topic.