anyone else with veryyyyy slow progress

My husband has been totally paralyzed on a vent and feeding tube since June 4. After six weeks he moved his head a fraction of an inch. Now at 2 1/2 months, he can control his eyelids which he didn’t have before (couldn’t close them), and is able to slightly open and close his mouth, but he can’t close it all the way shut at will. John’s doctor thinks he has the Axonal type also but doesn’t seem to have any way to really determine this until he sees how well John recovers. His GB came on in one day and he got daily treatments (5 plasmaphoresis treatments followed by 5 IVIG treatments) starting the next day. The doctor says that John’s recovery will be very slow and it may be Thanksgiving before he is off the vent. Some in the rehab hospital where John has been haven’t recovered after more than a year and are still paralyzed, but these cases came on after West Nile virus or the people had severe arthritis before onset. If your sister was in good health before and isn’t too elderly, eventual recovery with some chronic fatigue they tell me is likely to eventually occur. It sounds like you have cared for your sister at home? Did you have her on a vent at home? Was she ever on a vent?

Sam,

I know this is difficult to hear, and it doesnt help much but …… each GBS case is so very different. There are patients who can walk a few weeks after onset, some take a few months and there are some patients who still cant walk after 2 years. I was totally paralyzed and was on a vent with a trach for about 6 weeks. Once I left the ICU, it took a few weeks to just get me standing and ‘flopping’ about. The physical therapy was hard and took months and months – learning to move my legs and arms up and down at first, then trying to teach me to roll over by myself took ages. Also one of my therapists told me how important it was to learn to crawl again, and then try to stand and start walking. At the hospital, they got me walking to a point, but once I got home and went to private physical therapy, the therapist showed me exactly how to walk correctly, not just plopping my feet down in front of me. All this physical work is extremely hard, and can make someone very depressed, but it is all so very important to try and get the person up and walking again.

It can take a very long time to walk again or do the simple things in life like get dressed or bathe yourself. It took my husband 2 years before he could dress and bathe himself.

GBS is a neurological illness that cannot be rushed to healing, especially axonal damage which my husband had.

This could take years or months, no one will ever know how fast or slow they will heal. It’s to soon to tell how long your sister’s recovery will take.

Stay Optimistic, that’s good for her. 🙂

GBS = Getting Better Slowly. Unfortunately neither we nor our doctors can give you a time span. There are a number of factors: nerve damage and repair (including ivig and pp), physical and occupational therapy, and attitude. Racer13 has written many good posts about the healing process, especially therapy. Look him up on the members list above and then follow the instructions to read his posts.

Please remind everyone to be very positive–that is so very important.

By the way, I walk even though everyone, including the physical therapists, said I would not be able to do so. It took 11 months before I stood but stand I did.

Regards,
Marge

Hi Sam,

She’s not making slow progress. She’s making progess as fast as the disease will allow. It’s very importent to not let the word ‘axonal’ influence the therapy she is getting. Therapy should be gearing her to walk, by first doing stuff in a wheelchair, then sit to stand, and if she wants to walk agin, then she can. Don’t expect anyone to want it more then her. It will be work and painful, but the tradeoff is worth it. I had therapists stand me and hold me up in the beginning, and I was a lot worse off then sister is at the time. The longer the wait, the harder it will be. The most importent part of GBS, is knowing that nobody can predict the outcome, or recovery of a person, until they get there. This can be dangerous for some, because docs assume healing will be textbook, and done in 3 months, then walking and everything else will just fall in place. What if it doesn’t,and you just spent the last year sitting? Try to stay ahead of the curve and make something happen. You just sit there and wait for something to happen, it won’t. Nobody, I repete, nobody, can give her life back. She has to want it and go take it back, like many of us had to do. Like Marge said above, my doc wanted me to sit at least 2 years before doing any walking trys also. I was doing assisted walking with braces by that time because that’s what I wanted. Keep asking questions.

Hi Sam:
I am new to this so do not know if you will get this. I was DX on April 20 and started treatments ivig on the 21st. I am close to 70 years and I still have very weak hands and my legs are weak but I can walk although I look like I am drunk if I try to walk fast. I am okay if I take it slow. I wll soon be 4 months and I was in very good physical shape before so don’t know if age and condition has a lot to do with recovery. I have overworked several times and have been helped by reading these posts. I was down only a little over one week in the hospital and came home with a walker and do pool therapy twice a week. I think attitude and desire have a lot to do with it, but its so easy to work too much and not just rest. Its tough to just lay in bed and think about all the things you could do just a few months ago and wonder if you will ever do them again! I liked to play guitar and looks like I have lost my hands completely. Tell your sister to hang in there and take it one day at a time.

Slow progress:

First hit in Jan 04 – vent 4 months left rehab in March 05 – unable to walk /or sit to stand but slowly it keeps coming back – I’m sure I had some axonal issues but in an odd way I pay them no mind – my body tells me things are happening – the messages are getting through and when they do I pounce on them along with my therapists –now doing 4 days a week( OT-PT) including aqua therapy (which is great) — have been at current rehab (outpatient) for over a year – still in a wheelchair (power) for most activity but walking with a walker a good 1500-2000 feet a day – and two weeks ago stood up from the chair and had to yell at my wife for her to see it – then just yesterday the therapist said today we will try to walk with loft strands (crutches with arm clips) -we will never know if you can do this unless we try was her comment –so we did and it might have been a bit wobbly but I made – another step in the road – I guess that makes me not think about how “slow process” is going but rather it just means “progress” is happening which is the most important thing . Yesterday there were 2 other GBS ‘ers at the rehab all of us at different stages and all of us encouraged by each ones progress –
Do your best to forget that slow word – think of the power you can pass onto your sister and let mind and body push onward….
All the best

Robert L

I was diagnosed April 2005, and it only effected up to my knees and parts of my hands and I had patches kind of all over my body. But now I still Aam having troubles walking I have to wear AFO’s as I have dropped foot which was almost immidiate since I got GBS. I am trying to walk in physio and it is slow going as my legs are weak. Weakness seems to rule but I keep at it . My hands are back to normal thank god. It seems never ending at times but I know that eventually this will pass. I may not get 100% function back but I figure if I can walk and eventually walk without any aids and not need any help that will be a success.

Sonja

Hi,

Always keep in mind who’s paying who. A therapist wants to pay me $120 an hour to do what they want, then that’s a choice. When I pay them for a service, they listen to me. Same with doctors. These people are my paid advisors, not my paid boss. After I realized everyone was guessing, and heard one too many ‘I don’t knows’, I took control. Well, if you people don’t know, then it’s my turn. This comes after observing and trying things, and if they don’t make sence, or you know what your body is capable of at the moment, speak up and change it. I was getting acute rehab therapy in a gym. Observed everone in the gym(at least 12 others in there) for 3 days getting the same therapies as I was being shown. I then asked what each person is here for, and was told they were all stroke patients. Well, I’m not a stroke patient. Where’s the GBS therapy? Guess what? There is none. With my therapists, and my outside the box thinking, I devoloped therapies that did work, or more like different methods or approaches to, the things they had to work with. After completion, the whole therapy department thanked me for opening their eyes to a new way of thinking and how to handle a GBSer. Because I got results and their way didn’t. Purely because of routine and habit all us humans get caught up in. This is what I know, this is what I do everyday, therefor, this is what you get. The fellow GBSers who came after me that I visited there, were, for some reason, getting results much faster then anticipated. All starts with the patient first though. This is about survival the rest of a lifetime. I’ll be darned if I’ll just sit there, when they can just get up and walk out of a room. It’s my life I want, not their feelings soothed, or feathers unruffled, so they can feel good about themselves. Nobodies wrong here, they just didn’t have a clue as to what to do, so they went with what they know. It’s your dime, so a person does have power within the system. You aren’t defencless. I often quote Einstien, “The defininition of insanity is, trying something over and over agin, expecting a different result each time.”

Sam – If your sister is anything like me she will appreciate more than you know the small increases when things start to get better. I remember when my paralysis was leaving my face, I woke up on a Saturday morning and I thought I could feel the right corner of my mouth start to twitch a little when I tried to move it… by boyfriend was there and said he couldnt see anything, the doctors said they couldnt tell either and dismissed it. I had someone bring me a mirror so I could look and I couldnt see anything either… A week later I could close my eye with some effort and could move the right side of my mouth enough for people to be able to tell. Those types of little things were major accomplishments I felt and I would be willing to to out on a limb and say that she will think the same thing.

I was talking to my boyfriend last night about the use of a wheelchair and he asked what I would do if I never recovered my endurance and always had to use it when going more than a couple hundred feet… my answer was that I would deal with it. After going through what I and others have with GBS you appreciate the little things more than you can imagine. Sure I would love to walk again and go back to a normal life, but I appreciate each little bit that I get. Being able to roll myself over in bed, being able to walk with a walker, feed and bathe myself… all milestones that I was just happy I could do each and told myself that I could deal with whatever I got for recovery each time I could do something else.

One doctor I saw said that GBS will be very difficult for me as it progresses (and he was right) but he also said that it may be even more difficult for others such as family members to deal with as they won’t necessarily be in the position to appreciate the small things as they come back. So, keep that in mind and I will end this long winded post by giving you some advice…

When I was in the hospital my family was great. They would tell me that they thought I looked a little stronger, etc on certain days which helped because I thought they might be seeing something I wasnt feeling. Being the person who is constantly feeling pain, paralysis, numbness, etc its hard to tell from day to day but hearing someone else say these things to me helped. So if you think she is looking better in any way be sure to tell her and be upbeat and positive about it when saying it (kinda like if you were talking to a kid trying to get them excited) it helped me. If she tells you she notices any improvement, no matter how small, be very excited about it when she tells or shows you. This helped pull me thruogh the tough times in the hospital and I’m sure it will help your sister as well.

Sorry for such a long post but I hope this helps you some.

One doesn’t notice any progress on a day to day basis but over time there is progress. One has to think how it was several months back and you realize there has been progress. It has been 8 months since I first got GBS and I am hoping that after one year I will have a lot more improvement.

[quote]

2. family should encourage GBSers , it s rrule n0 one, every single change is important we have to learn to celebrate recovery

see you[/QUOTE]

My family was marginally supportive. My mom, who also has her own problems, seemed to think her problems were worse than my own even when I could barely walk. “are you fixing dinner tonight?” she would ask…my response is “I can barely walk to the bathroom!”. My hubby cant fix it so he doesnt want to deal with it. I know that sounds harsh, and sometimes it feels that way as well. But maybe it isnt. He has been there for me and would help if i asked, but I havent. He says to keep a positive attitude, “suck it up” and concentrate on getting better and stronger. It has been hard to do this on my own but I have somehow. I think my kids, mostly my middle son, have been the most supportive even though they dont totally understand. It’s wierd, all my life I have had to deal with the good the bad and the ugly on my own it seems. sometimes I feel very lonely and sad.

8 weeks later I am able to do most everything I was able to before. I get tired easily, have some pain and weakness still, and am learning my limits. I feel blessed that it was hell (mild next to most here) for a bit but is getting better so soon.

You know, the sad thing is our family and friends forget very quickly how bad we really were. Once they see us partially keeping up they decide we are normal and should be able to do everything we did before. Little do they know how much pain we are in, how tired we are, how difficult it can be to accomplish the smallest tasks sometimes, and yet we do it with a smile on our face and thankfullness in our hearts because there was a time that we couldn’t accomplish those little things. I don’t think anyone ever truly understands what we have been thru and that’s why the support groups are so important, this forum is so important and education is so important. Together we will help each other survive and will help the next family do a little bit better than we did. The lives we lead will impact someone else and this illness will be along for the ride. Remind your family when you need to that sometimes the monster still gets us down but not for long, they just need to remember that we need a little break once in awhile too. As for the husband that can’t cook, I think it’s time he learned how to use a microwave or order take out..Good luck

Sherry

[QUOTE=Stormy]You know, the sad thing is our family and friends forget very quickly how bad we really were. Once they see us partially keeping up they decide we are normal and should be able to do everything we did before. Little do they know how much pain we are in, how tired we are, how difficult it can be to accomplish the smallest tasks sometimes, and yet we do it with a smile on our face and thankfullness in our hearts because there was a time that we couldn’t accomplish those little things. I don’t think anyone ever truly understands what we have been thru and that’s why the support groups are so important, this forum is so important and education is so important. Together we will help each other survive and will help the next family do a little bit better than we did. The lives we lead will impact someone else and this illness will be along for the ride. Remind your family when you need to that sometimes the monster still gets us down but not for long, they just need to remember that we need a little break once in awhile too. As for the husband that can’t cook, I think it’s time he learned how to use a microwave or order take out..Good luck

Sherry[/QUOTE]

Well said Sherry… My boyfriend didnt know how to cook either. Since I got home he is trying and often asks if I want pizza as the easy way out. When I say know I can see a little panic set in as he trys to figure out what he can make since he knows how to make pizza and spaghetti. I have talked him through making a few things and my biggest problem is I have to bite my toungue if he is doing something “different” than how I do it as long as I know it will turn out ok. I try to make dinner if I can just because I like to feel like I’m doing something useful but at the same time I know my limitations and often am just too sore and tired by dinner time to prepare a dinner. My boyfriend still does ask me what we are doing for dinner every night and when I respond “whatever you want to make” I can see a look of “oh crap” on his face but its kinda funny at the same time 😀

Hi Sam,

I hate to say this, but it has to be said, or reminded. We are a very visual society. In order to keep things on an even keel, mentally and phisically, no judgements should be made as to how her condition is doing at this time. For a GBSer who hits a certain depth in this effecting function, any return can be precieved as ‘perfectly well’ as you stated. She’s healing, showing improvements, which is what we all want, but perfectly well, is yet to be determined. The even keel thing, is knowing setbacks occur all the time, all down the line, and keeping emotions in check so any dissappointment doesn’t hit even more then it should. A 1 step forward, 2 back, journey of sorts. In other words, you precieve things as perfectly well, and her too for that fact, looking to specifics for that, when I know that when she starts to stand and the walking process starts, she’ll feel the overall effects in combination, and feel will change, then the first thing that hits her is, I thought that area was perfectly well. Possably defeat her in ways, which nobody wants. Those things are good signs that healing is ongoing. Hard balance to obtain, that’s forsure. Keep us posted and tell her she isn’t alone in this.

Sam,
My GBS was 10 yrs ago and my recovery was very slow. I spent 2 months in ICU on a vent w/ trache, had a feeding tube and several other things hooked to me. I spent 5 1/2 months in a rehab facility, I had exceptional physical and occupational therapists. They started me out on a tilt table, because I had been laid up in bed for so long, gradually moved to a standing box. All of this was extremely slow and painful but you have to want it and can’t feel sorry for yourself. I was in a room with a cancer patient who had to have her leg amputated, she gave me hope, she was so positive and would talk to me about eventually being able to walk again when she would never get her leg back. It is so important to remain positive for your sister and she needs to be positive. I don’t know her age, but after my GBS I had 2 children and although I have never completely healed I don’t let it stop me. I was pregnant while I was still trying to recover, being pregnant made me work that much harder. There are other women on the site that have had children afterwards, I guess what I am trying to say is there can be life after GBS.
Take Care and Be Positive!!!

im on my third year of this and i think this is as good as its gettin

Hello Ben,

Your are just an example of how to be a loving brother. I wish the best to you and your sister. But…..

Do you really want to see a change?

There are no small changes, is everything at once, probably for GBS, means two weeks. I was blessed to be there for only 3 weeks, and now I need to speak up. I have always been shy, but not this time and perhaps this is the reason I have posted my ad.

This sickness will go as long as you believe it. We are meant to be on our two feet, be strong and enjoy life. Please tell your sister that it is time to face a reconciliation with God. In illness like this nothing works better, it takes just a honest talk to our creator, tell her to speak up, and give her the privacy to do so. You can help by praying. She must repent and will see all the changes that you and your family have been hoping, sorry for my english, but it is true.

I am attaching my story, but without Him nothing will be possible, but He is the God of the Impossible.

Blessing and keep me posted because you will see a change in less than 3 weeks and not only on her life but your for been such a loving brother.

GBS was the most terrible thing that happened to me. I got the disease in April 9, 2006, the day before I was in my bicycle with my family, next day I could not even stand up, I could not believe it, I was due to go to Italy next day, thanks God it happened before my trip. Anyway, it was horroble. sorry for my english, but I am a Mexican and at that time I was living in Krakow Poland for my work, I had been living there for 3 years, as an expat, life is easy and you enjoy the best, but when I was due to go to an appointment for my next assignment, thats when it happened. We were having family visit in Poland, I was riding my bike and discovering new trails, and suddenling next day I could not stand, at the begining I tought it was just pain, because I was trying new trails, but later in 6 hours, I could not move, the ambulance needed to go to my home and at the hospital I was diagnosed GBS. When I was at the hospital the company I am working for, send me some information related to the disease. I just put them in the drawer, I said, If there is someone that will help me that will be God. Next morning to my very much surprise I could not even move, but my right hand and only rested in the chest. Then I realized that if this was the case, it was for a reason. God loves to be praised, I was going to learn that. So there I was, the scariest thing came later in the day, when they needed to open up my neck and stick a device to change my plasma. I was so afraid, that when I was at the operating room, I did not know how to handle it. So I remembered a passage in the bible “revelations” that describes the face of Yeshua (Jesus) like a bright sun, I concentrated myself on that, I suddenly evevrithg was finished, no pain and nothing. We called on the phone a believers friends to ask them to pray for me, the first night I caught developed in me. I could not cought, my nerves did not responded, the doctors just watched and told us to be alert and call them if more complication arised. Just as a note, the Polish hospitals installations, not equipment are well 30 years old, but the attention of the doctors and nurses if first class in the world, but you believe what you see, and it was scary. Anyhow a I started my plasma treatment, by the 3rd day there was a holiday in Poland and doctor where taking the weekend off. I told the doctor, that by the time he will return, he will see great changes in me. Aside he told me, that he admired my positiviness , but that I should not be very enthusiastic. Anyhow we proved him wrong, thaks God, on Monday I was walking, going up and down the stairs of the hospital without assistance. All the staff was surprised. In 18 days I was out of the hospital and due to Copenhagen for a Benny Hinn crusade, we stopped in Berlin for sightseen, which to tell you the truth I was not able to walk for a long period, as the same as the first two days in Copenhagen, but later we traveled for a Jewish Machol dance seminar in Hungary, where I danced my body off. It so good to be able to move without assistance and supervision.

I thanks God, the hospital staff and my family for all the support.

How do I think everthing started:
1. Living in a foreing country, but I have lived there already for 3 years.
2. I was eating KFC (Kentucky Fried Chicken) every weekend, by the way my family always told me It seemed to be undercooked, which I never believed.
3. Poor diet
4. Believing that you own your life

After the fact, I waked up for at least 3 month feeling my arms weak.

I moved to Italy, I changed my diet, here there is no KFC, but anyway I do not eat pasta and pizza but just once per week.
I have joined a swimming class twice per week
and my post symptoms completly disapeared.

So my recommendations are:

If you are or have been thru GBS:

First focus in God, there is no one else that can help you.
2. after the plasma treatment, you will feel much, much better, every time you go.
3. do not be affraid to go back to your normal life, we are no supposed to be in be and without moving, it takes time, but focus, and you will do it, there is no pain, just walk, run , dance, etc.
4. change your diet, I think that the secret is there, do not eat fat, high proteins like pork.
5. Change your habits, life is one, and should be wonderful
6. Love GOD for the new opportunity he just gave to you.

My life has changed so much, that I will never go back to were I was, I have learned my lesson, and God has been good. Why did it happened, probably because He loves us so much, that some of us, have a hard head and require an special treatment.

Anyway, I hope you the best if you are going thru GBS or you have been. I count myself as a pride winner. but I could not done it myself without God, do not give up. Focus, He is always waiting to be called, no matter what you have done in the past. If He did it for me the lowest of all, you should expect the best for you.

Love you. Hope that my story helps you, to stay strong and believing, He will just do it for you.

Aftermath. I am living now in Italy for a period of 3 years. I am better fit than before, stronger, and happier. I am do to go to my home country in 7 days and tell everuybody what happened to me.

I bless you all: Yevarejeja Adonay veichmereja, Adonay Pana veleja vicuneja, Isa Adonay pana veleja veya sem leja Shalom.

Just a powerful Jewish blessing.

Ciao. I you want to contact me feel free.

[email]arlulo@hotmail.com[/email]

Shalom

Hey Kelly ~ don’t give up now 😮 I am 11+ years post GBS and I still find “little improvements” as my nerves continue to heal. This disease is like “pushing a rope” when it comes to healing. The only things that make the over-all difference is time and patience! Ask Gene or the many others who know 🙂 Yes, you can support your body as it heals (nutrition, water therapy, yoga etc. etc.) but it will heal at it’s own unique, individual pace.