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Any experiences? In hospital rehab now after 5 weeks in intensive care, 4 of which were on a ventilator, can't walk now, how long did it take you get back to normal?
christ good luck man.
Havent had it myself. But always remember Marcus Babbel's fight against this virus, he got back to top level football after a year or so.
deffo someone on the forum that has had it i remember the thread.
****s sake Paulo! Didn't know things were so bad! All getting better now?
Should make a full recovery, I'm aiming for before Xmas, but I'm being told that January was more likely. By the way, who are you? Are you a pal with a new name?
Yes I let you have a go on my big bike outside the chip shop a few years ago
that sucks mate, glad to hear on road to recovery. Never had but looked after a few, don't know if been pointed in their direction but have seen the GBS support group have been helpful to some punters - http://www.gbs.org.uk
You have one big advantage, great attitude and determination to rehab, from my experiences this is a great step forward, easy to not have it.
All the best and hope back on bike before too long.
Cheers. Charlie, I thought it was you!
I've healed quicker than expected. Was in intensive care for a lot less than expected and have managed to stand with the physio's assistance. So, could he worse.
That sounds really nasty to have had it at that level.
One of the guys on my Paramedic course had it (and actually used it for his final presentation) but it only affected his legs with some generalised weakness in the rest of his body. It took him a few months to recover completely.
Good luck and please heed the advice given by the Dr's on recovery and don't try too much too soon.
jeez, i've just has a look around at what it is. Sounds like you were really unlucky, then really lucky!
paul, thought i had not seen you on here for a while..........
hope you get better soon mate...... 😀
I had it about 20 years ago.
Right arm and right side of back atrophied alarmingly due to nerve damage - my right half looked like I'd just escaped Belsen. Gradually regained function, but I still cannot trust my right arm because it still goes floppy sometimes without warning when it's under load - it was "interesting" when that used to happen when I was hammering my MX bike through tight stuff. Any heavy upper body exercise still leaves me knackered for days. No problem on the bike these days though, legs are good.
Hardest thing was going from being really really fit and strong to a wet rag. For the first few years I tired very easily and there was some days I was extremely lethargic. I've learned to not push it when I'm feeling like that.
My understanding is that the nerves that get destroyed are replaced by adjacent ones, and you make a recovery. My right hand still misses anything thrown to it by 2cm if I don't get a chance to think 🙂
The downside of the recovery is that there may be dieback of those adjacent nerves after about 20 years. At least that's what I was told. My 20 years are up, but so far, so good.
Although I would be regarded as having medically recovered, I have never regained the level of fitness or strength that I used to have and I have never been able to exercise at my previous intensity.
Good luck and keep us posted on your recovery. Don't try too much too soon.
Edit: just read this through again - it sounds a bit like a jeremaiad - I may feel I'm not up too much, but I'm still able to ride 24 hour solos on my single speed, but I gnash my teeth because I know it could have been better.
And ignore any MTFUs - it just isn't worth it.
Hi Paul,
I had GBS in 2002 - 2003. The speed with which it took hold on me was terrifying but I am pleased to say that I considered myself about 90% recovered within about 6 months and probably 95 % recovered today, although I am told that the 5% reservation could be as much in my head as anything else.
It was October 02 when I first began suffering and it initially presented itself as a sciatic pain in my lower back and right leg.
I initially thought that I must have injured my back at work somehow ( I have an active job) and the hospital misdiagnosed it as a slipped disc and initially I spent about 3 weeks having physio including being put in traction every other day but rapidly the illness took a hold on me and by Christmas 2002 I was restricted to a wheelchair with my fiancee having to help me to do everything.
The whole right side of my body was affected and as epicyclo says one side of my body just wasted away, which looked so odd as I am not exactly small build. Fortunately my father in law to be is a GP and I was able to get a second opinion at his local hospital and from Christmas I steadily improved, gaining enough strength to walk again in February 03 and was back at work by the end of March.
Have a look at www.gbs.org.uk for further info. If you want to email me my address is in my profile.
You [u]will[/u] get better. Half of the battle in my case was getting somebody to correctly diagnose the condition. The consultant at my local hospital tried to tell me it was psychosematic once he ruled out a slipped disc and advised me to seek help for work related stress!!!
All the best pal
Mine was a lot quicker. Sickness bug on Wednesday, admitted to hospital friday and on a ventilator by Sunday.
Bump for the day shift
Just think how lucky you were that you hadn't sold something through the forums before you were brought low.
My business partner had it and was told that recovery would take upto a year and could be in hospital for 6 months actually he was back at work after 6 weeks so was very lucky. His GP spotted it almost straight away!
Good luck and keep us posted!
Good luck for the future, it's a beast of a condition.
Paul - MTFU.
(just wanted to be the first to say it)
The Hume unit should have some other contact details for the Guillian-Barre society (according to their teaching documentation anyway).
E-medicine (the font of all my medical knowledge) reckons 6-12 months to return to full strength but some patients continue to show recovery beyond 2 years.
(And for those worried about him regaining his former levels of fitness that should happen in about a week or so once he can walk again. Anything above that will be an improvement)
I might pop in and see you Tuesday if that's OK?
Death
I might pop in and see you Tuesday if that's OK?Death
Hmmm.... I'd think about that one Paulo.
Death, feel free. I'm in physio at 2:00 for an hour. X
Good luck is all I can say. I have looked after folk with it and its a scary business
Bro in law has it - not as bad as you (but was in hosp' for a while) he's now pretty much recovered (pos 95% as per above) - used an enduro motor bike to replace his favoured sport (rugby) as a rehab aid! (nutter)
best of luck with your recovery
I've just re-read my original reply about my recovery from GBS and I haven't described the way it feels now very well. The best way I can put it is that my lower back and to a lesser extent, my right leg has a slightly dis-coordinated feel about it. Whether this is due to permanent nerve damage, I'm not sure.
Bregante - Member
...The best way I can put it is that my lower back and to a lesser extent, my right leg has a slightly dis-coordinated feel about it.
Slightly discoordinated is a good description. I can catch a ball if you throw it to me and I get to watch its trajectory, but if I try to grab something falling, I just miss with my right hand. Left hand still spot on.
Coordination Is rubbish just punched my juice over all my swag
😆
The first of many...
I keep telling the nurses that I'll be out of here by Xmas. I doubt it 🙁
When I first started walking again I had to "think" about moving my right leg. Occasionally I would forget and would just topple over because the rest of my body assumed my leg had moved. I remember it happened when me and mrs B were viewing our wedding venue. Funny now but really embarrassing at the time 🙂
🙂 I wish my arse would return so that the loo seat stopped hurting
Does that mean you're finally slim?
What do you mean, finally? Lost about 2 stone, down to 15 from 17. How's you?
You free for visitors tomorrow or Saturday? I might be passing Sunderland tomorrow..
Sorry death, just seen this.
Did you guys experience loss of taste? Sweet things taste disgusting now, and most foods taste odd.
If you had a tracheostomy it is not unknown for sense of taste to be altered temporarily after, not sure physiology behind it.
no loss of taste in my case but a serious loss of appetite
No taste problems for me - that I can remember. I probably wouldn't have noticed, too busy being miserable.
Bag of haribo looking at me, but tastes rubbish. Had the taste thing happening before I went into iccu, so sure it's from the syndrome
All the best mate. My brother had it a couple of years back. He went from leg pain to paralysed from the neck down in a astonishingly quick time. He was in hospital for 6 months.
He still struggles to walk normally(he is very flat footed).
I clearly effects everyone differently and therefore the recovery result can be different. However it should be noted that my brother has some learning difficulties and was not at all motivated during the physio. If he was as active as he was stuburn i've no doubt he would have made a better recovery.
Of course i have no medical experience to back this up!
Well, walked with a frame from the gym back to my room, feel knackerd but good.
Get well soon, Paul - best wishes for a full recovery. Keep fighting it!
(You don't know me, by the way!).
My dad had it. Affected his back and paralysed him from chest down. Spent almost a year in a chair after about 3 months in hospital then 6 months on crutches and sticks. Full recovery but was proper humped at the time.
Well, walked with a frame from the gym back to my room, feel knackerd but good.
Hardtail or full-sus?
Singlespeed hardtail, natch
One step at a time...
Yep well done Paul, keep us updated
Get a move on, where supposed to be going out for drinks before xmas....
Wow - best of luck with the rehab
campylobacter ?Sickness bug on Wednesday, admitted to hospital friday
Death, I'll try my best
Scaredy, what's that?
diarrhoea/food poisoning bug (barbecues etc) that is associated with developing GB
Ah. Me, my wife and my father-in all had s&d, the docs in iccu said that they couldn't find anything that they can link the syndrome too.
Down to just one walking stick now. Be a longb time until I'm mended, but at least I can look to be discharged now.
Just hurry up and get well and stop messing around! Sounds like you might be home for Christmas?
Possibly some time next week, all being well
Don^t want to worry you, but I saw a program on "women that kill" and a wife poisoned her hubby with arsnic & they thought it was GB!!
That would explain it.
Walking with one stick now. Home for the weekend too. Can't wait.
Good luck. Take it easy - don't overstretch your energy.
Best of luck, just read up about it and wow. Healing vibes.
Discharged and home. Feels Kind of strange.
Excellent news. Enjoy your Christmas 😀
Huzzah..!
Merry Christmas..! 😀
Excuse the lowering of the tone here. Did any of you suffer from bouts of vomiting? I've been suffering from this roughly every other day. Not nice.
Cheers.
I don't remember having that problem so long after the initial illness.
Started about 2 weeks ago, so not had it since discharge from hospital. Doctor has prescribed me some anti sickness tablets and they seem to be doing the trick.
2nd blog installment for those who are interested
http://paulosoxo.wordpress.com/2011/01/26/whilst-i-was-away/
No idea on the vomiting front here either mate
Paulo - Bon Courage Dude......
Your trauma/illness has shown you many things which you have chosen to share with us.
Please keep blogging.
SB
Well, I've kind of hit a brick wall, feel like I'm going backwards not forwards, the pain is worse than ever and I need to use my stick to ease the pain when walking any great distance. Feet still numb but very painful, hands feel like they have ball bearings in them and **** me I'm sore.
Having a few down days here 🙁
I'm sure they're pumping you full of conventional medicines but checked in with my freind who's a natural medicines guy and he says all antioxident things are good for anything immune system related so here is a cut and paste of the 4 natural things, don't think they'd interfere with your other medicines but probably better checking, hope this helps 🙁 Debs
[b]Wheat Grass:[/b] This is an antioxidant
[b]Hypericum[/b] which has specific positive effects on the myelin sheath of nerve fibres and is a great help in the case of Parkinson's and Bells Palsy both of which involve physical degeneration and or inflammation of the nerve fibres so not the same thing but similar????
[b]Mugwort[/b] which is another nervous system tonic which is used to support healing of any physical nervous system injury.
[b]Comfrey[/b] which is a well known support for healing of bones and connective tissue but also works to normalise other tissue in the body.
Don't give up. I have high expectations for your quest...
BH
Keep going Paul. You WILL get better. It doesn't come overnight and I remember a few "false dawns" but everybody is rooting for you.
Cheers guys. Thanks once more for the sponsorship
Paul
X
I had good days followed by days of absolutely empty tank. I had to learn to measure out my efforts, still do actually. The worst bit was watching muscles atrophy.
Not much I can say that would be of comfort except that it can and does get better. Basically don't measure yourself against others, just against yourself.
I still manage a couple of 24hr solos each year and a few 12 and 8 hrs - although no-one would accuse me of being fast 🙂
man i thought this was something to do with the guitar 😳 i hope you get well soon paulosoxo.good luck and you'll be out on the trails in no time 🙂