How Long Did It Take You to Recover

hi wallace & welcome,

unfortunately no one knows how long nor to what degree a gbser will recover. resting in a prone position as often as you can will help heal nerves. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Wallace-this is a revamped forum and I’m not sure if many of the ‘old’ members know that its been fixed up and working again so you may not get many replies really soon. Recalling the old forum, there were many variations of the recovery completeness as well as the rate. I’ve been told that we never get to 100% but in many cases we get so close to it that you can’t tell the difference. Personally, I notice no difference now except my balance isn’t always great especially when fatigued. Also you might get transient tingles and pain. The knees were especially weak (wanted to just fold) and I recall the ‘lazy’ feeling in them but that all passed. It is very scary and stressful as you wonder if you will ever be the same again, but it sounds like you are on your way. If you are standing now, then control of your feet and toes musn’t be too far behind. I would rate my recovery as quite a bit faster, but paralleling yours in terms of what seems to be going on with you.You’ll get there.

good luck……Ray

I went “in” on July 13 2004 with a pretty severe case.

I was walking in 70 days, back to teaching part time in 6 months, back to “somewhat” fulltime teaching this past fall ( then Katrina screwed us up pretty bad)

I’m almost 2 years out and I would say I’m at 80% and don’t expect to ever be 100%/ I was one of those not expected to walk without a walker the rest of my life so I’m pretty happy about how well I’m doing. I can feed myself and wipe my own rear end so I feel as though everything else is icing on the cake.

My doctors feel as though my recovery is ouitstanding but I dare say I’m pretty lucky and very determined.

There are many who were not as bad off as I was but are unable to return to their lifestyles. Many becuse of their physical limitations and some because they insist of comparing ” now” with “before”. We will NEVER be the same. Once you accept that, and measure your progress against laying in the bed with all the tubes, the better life will be.

It’s amazing how well you adjust with a positive attitude.

Keep in mind that it’s your body. It will TALK to you. You will know better than anyone else how hard to push yourself. Even with the occasional set backs that come along to kick you in the butt, it’s still better than laying there trached & vented with the feeding tube, catheter and the pain. At least now you can scratch what itches………………..

I much prefer to get kicked in the butt every few months because I forgot that I can’t do everything then to lay in bed never trying.

STAY POSITIVE

Hello and welcome,

As gene has said GBS recovery is an unknown. We all recover differently. Make sure you have plenty of rest and don’t over do it as we all have at times.

Debbie

How long did it take me to recover?
I didn’t, but it took me sixteen years to realise that it is one’s mental attitude that is key to an acceptable quality of life.
Like many of us I was preoccupied with useless hands and feet, watching vainly for some signs of recovery until I realised that it was what was going on inside my head that really mattered.
OK so my lifestyle has changed, but life is still precious.
Keep smiling!

Well….as most have stated it’s different for everyone….and you know what, that still pisses me off at times. I am approaching my one year Helliversery (as some folks call it) and I am still where I was 6 months ago….walking with a cane, knees that always feel like they are just on the edge of folding, hands that can’t open a water bottle…….but considering all things I agree with The Other Mike….I can take care of myself, I work full time and the rest is “icing on the cake”. Rest, lay prone alot and God Bless
Stephen

I am just past my one year anniversary. I was paralysed head to toe. I am now doing great. I am almost 100%. Not quite. I still get tired easily, the heat of late has really gotten to me, I still feel weak in the knees sometimes, and I still have trouble with my feet. But, I am still improving. Don’t get discouraged. It will take time.

Tonya Correll

Hard question for any given indivdual. Getting back to somewhat normal function took me about 6 months. Now five years out I still have residuals.

Hi and welcome….

It takes what it takes and each case is different from the next. We are given each day and we have to make the best of it that we can. Today, I was able to get some chores done and plant a couple of things in garden. Two days ago, I could barely move from fatigue and pain. There isn’t any logic or reason, but I do find that my emotions can cause a flare-up to happen. Relax and take care of yourself the best that you can. We never really know how we are going to feel. Some people do have a fantastic recovery and can carry on with their lives. They probably do not visit the forum often because they try to leave their disease behind. A lot of the people here need constant support to be able to enjoy their lives daily.

Welcome Wallace, glad you found us. Your recovery time will vary depending on lots of factors. Try not to overdo it and allow time for lots of rest and recovery. Take care.

Jerimy

Hello Wallace,

I ‘came down’ with GBS in December 1985, I became completely paralysed and had a trach for about six weeks, icu slightly longer. I stayed in hospital for about a month after that. I was allowed to leave hospital once I could stand on my own for a few seconds with my eyes closed. My parents took me to physical therapy almost everyday for about 5 months. I seem to have led a very active, happy and normal life. Thankfully, I have not had the residuals that some have, but looking back, I do realize that I have been affected by fatigue and slight weakness. After a setback April last year, I am suffering from extreme fatigue and burning, cramping in my feet and hands, and weakness in my limbs.

My father was diagnosed with GBS in Feb. 06, was paralyzed from the waist down & now is walking unassisted, and is tackling stairs.
I think it all depends on your body, your mind, and your motivation. Never doubt that you will be 100% again, and work toward that!
Michelle:p

[QUOTE=GBSdaughter]My father was diagnosed with GBS in Feb. 06, was paralyzed from the waist down & now is walking unassisted, and is tackling stairs.
I think it all depends on your body, your mind, and your motivation. Never doubt that you will be 100% again, and work toward that!
Michelle:p[/QUOTE]
I am still in a wheelchair after 9 years. I tell myself I will walk independently again.

Welcome Wallace. Like many of the other posters, I was paralyzed. At age 65, with severe asthma/copd/several surgeries, I walk with a cane, live alone, go to school and enjoy NYC.

Coping with residuals, especially chronic fatigue, can be problematic but a positive attitude makes amazing changes.

Regards,
Marge

Wallace,

You have asked the question that every GBS patients want answered. It is also a question that can’t be answered with any relevance to one person or another. As you have read in the responses you have received so far, there is no standard recovery from GBS.

Follow the great advice you have received. Get rest, exercise, get mad at GBS, and be determined to get over it! Your attitude can effect the outcome! Keep your “cup half full” rather than “half empty”.

Regards,

Bob Doehrman
Regional Liaison
Mid-Atlantic Region

[COLOR=red]still rolling around in my wheelchair after 6 years. someday I will recover, I think[/COLOR]

Hi,

I am a little over 6 years post GBS. I was in the hospital for over 3 months. I don’t remember the first month at all.

I can walk with two canes and have to pace myself on anything I do. I can’t work, but I am so glad to beable to get out of bed and do some house work. It may take me longer and more painful, but I can get around. I will never be any better;but, as most have said, we have to put our minds to the future with a positive outlook.

Anyone with GBS will never be the same again. The residuals are different for all and may come and go for some. I only wanted to be able to get out of bed and walk and climb stairs. One thing you do have to remember is that you need exercise to keep all parts working. My therapist said: “If you don’t use it you will lose it”.

Good Luck,

dear friends,
my father is 78 years old,
he found himself with numbness over limbs, on 3 Dec.,2005.
within 3 days, he become paralyse.
he needed intubation, all the muscle could not move, even his eyes could not open. we could not found any signs of life on him.
he received a five days course of IVIG, and 5 shifts of plasma exchange.
the doctors said that , the prognosis was very poor. he was not much responed to the treatment.
after a week we found that he can move his feet very gently.
the inprovement is very very slow.
it was a competition of “recovery and complications”.
he got heavy chest infection and diarrhoea, over the first two months.
the main point recovery of such patient is “care”
I am so much thanks of the nurses and health caretakers.

I was originally dignosed with GBS. I was told I’d be back to work in six months. Then my nerologist said “oh you have a bad case” then promised I’d be back in a year. My condition did not improve. The first year I almost died (literally) and had to learn how to walk again etc. After the first year I did not see improvement for another three years (during that time my nerologist changed my dx to CIDP); it was very discourging. I was thankful to be able to take care of my children. I begged God to just let me be well enough to do so. Then when I could (with a whole lot of limitations) I of course wanted more! I wanted to go back to work and live a normal life. Yet, nothing helped.

Now, all of a sudden, I’m stronger and I’m able to go without plasma pheresis (I’ve had 106 treatments). I’m not sure if I’m well enough to go back to work or not. I’m worried because I keep reading about peope relapsing. I just want to be done with this thing too!!!!

The best thing you can do is keep a positive outlook. Count every blessing and every milestone. I know it’s really hard when all of your goals have been instantly changed for you. Keep a determined attitude. Never give up. Exercise when you can, rest when you can and dont’ be too hard on yourself if you have a bad daY.

Wishing you well…