Guillain-Barr Syndrome
Discussion
Update:
Things going well for me, strength increasing slowly but steadily apart from arms/shoulders used for wheeling the chair, which are rapidly improving.
Eating well & getting a lot of exercise.
Had a problem with the cycle machine (used from the wheelchair). The solid tyres don't grip on the linoleum floor so the whole chair with me in it constantly slid backwards.
My mate from PDQ Motorcycles made me some chocks to lock the wheels. Haven't tried them with the cycle machine yet but he tried push me backwards & the chair remained put.
Hoping to start aided walking this week. The Mrs & family have been marvellous.
Missing our dogs terribly though , especially since one had another fit last night.
I've been given a preliminary discharge date of the end of April. Aiming for sooner
Once again, thanks for the kind words & encouragement.
Things going well for me, strength increasing slowly but steadily apart from arms/shoulders used for wheeling the chair, which are rapidly improving.
Eating well & getting a lot of exercise.
Had a problem with the cycle machine (used from the wheelchair). The solid tyres don't grip on the linoleum floor so the whole chair with me in it constantly slid backwards.
My mate from PDQ Motorcycles made me some chocks to lock the wheels. Haven't tried them with the cycle machine yet but he tried push me backwards & the chair remained put.
Hoping to start aided walking this week. The Mrs & family have been marvellous.
Missing our dogs terribly though , especially since one had another fit last night.
I've been given a preliminary discharge date of the end of April. Aiming for sooner
Once again, thanks for the kind words & encouragement.
ReaderScars said:
Smiler. said:
...Missing our dogs terribly though...
Is a rendez-vous in the hospital car park with the hounds out of the question?If things go well this week, it might be possible next weekend. Something to work for
Update.
Five weeks after the onset of GBS & I'm able to walk small distances with the aid of crutches. Even better news is that the medical team have agreed to let me home for Easter.
Not overnight but I can visit each day for a few hours.
Walking is very hard & not without pain. Well not pain exactly, but with each step, muscles & tendons which have been unused for weeks suddenly stretch & work & combined with the damaged nerves result in a weird sensation.
I'm very unsteady & have to concentrate on the technique to achieve the correct leg & foot action. It's easy to move badly which will actually hamper recovery.
Now I'm standing, none of the staff can belive how tall I actually am (6'7"). It took a week to find the extra long crutches. The physio's tried a variety of walking aids, none of which were big enough.
One thing that has surprised me now I'm able to stand is how wide the wheelchair actually is. It's massive. I think it's designed for people a "lot" bigger than me although I have likened my use of it to a shaved Orangutan in a T-shirt.
In other news, I've received a form from the council for a temporary Blue Badge. It's 20 or so pages long but from the accompanying letter, it seems that I won't be eligible as I'm under 65 & not in receipt of the upper limit of disability living allowance.
I'm self employed so I'm likely eligible for exactly no benefit of any kind (unless I'm unable to work for years or something which may not be the case).
I'm going to collect some electrical components from home over the weekend & attempt to make up a small assembly next week during OT (wire up a relay or something).
My hands are the least progressed limbs as far as rehab goes, I still can't close my fingers together & flatten them out.
Anyway, looking forward to seeing the dogs & spending some time with the Mrs & the family. It's a load off my mind knowing she can relax too this Easter.
This whole thing has been a massive strain on her & she hasn't had people running around after her 24/7.
All in all, very good progress & compared to some of my fellow inmates on the rehab ward, I've really gotten off very very lightly.
And to that end, hope you enjoy whatever you do this weekend
Five weeks after the onset of GBS & I'm able to walk small distances with the aid of crutches. Even better news is that the medical team have agreed to let me home for Easter.
Not overnight but I can visit each day for a few hours.
Walking is very hard & not without pain. Well not pain exactly, but with each step, muscles & tendons which have been unused for weeks suddenly stretch & work & combined with the damaged nerves result in a weird sensation.
I'm very unsteady & have to concentrate on the technique to achieve the correct leg & foot action. It's easy to move badly which will actually hamper recovery.
Now I'm standing, none of the staff can belive how tall I actually am (6'7"). It took a week to find the extra long crutches. The physio's tried a variety of walking aids, none of which were big enough.
One thing that has surprised me now I'm able to stand is how wide the wheelchair actually is. It's massive. I think it's designed for people a "lot" bigger than me although I have likened my use of it to a shaved Orangutan in a T-shirt.
In other news, I've received a form from the council for a temporary Blue Badge. It's 20 or so pages long but from the accompanying letter, it seems that I won't be eligible as I'm under 65 & not in receipt of the upper limit of disability living allowance.
I'm self employed so I'm likely eligible for exactly no benefit of any kind (unless I'm unable to work for years or something which may not be the case).
I'm going to collect some electrical components from home over the weekend & attempt to make up a small assembly next week during OT (wire up a relay or something).
My hands are the least progressed limbs as far as rehab goes, I still can't close my fingers together & flatten them out.
Anyway, looking forward to seeing the dogs & spending some time with the Mrs & the family. It's a load off my mind knowing she can relax too this Easter.
This whole thing has been a massive strain on her & she hasn't had people running around after her 24/7.
All in all, very good progress & compared to some of my fellow inmates on the rehab ward, I've really gotten off very very lightly.
And to that end, hope you enjoy whatever you do this weekend
Smiler. said:
Update.
.....
In other news, I've received a form from the council for a temporary Blue Badge. It's 20 or so pages long but from the accompanying letter, it seems that I won't be eligible as I'm under 65 & not in receipt of the upper limit of disability living allowance.
good news that you're improving and can escape of at least parts of the weekend......
In other news, I've received a form from the council for a temporary Blue Badge. It's 20 or so pages long but from the accompanying letter, it seems that I won't be eligible as I'm under 65 & not in receipt of the upper limit of disability living allowance.
I left the bit about blue badges in to comment that I don't think it as black and white as it seems it's been suggested: my wife is under 65 and not in receipt of upper limit disability living allowance: and she has a blue badge. It may be different councils have different levels of flexibility and/or things have changed in the last couple of years or so since she got hers, but worth checking as it sounds like despite the improvements, still someway to go.
Related to that, not that I'm sure it's top of your list of things to sort, but as/when you're thinking about driving again: your condition is one that you need to notify DVLA (you may have already been told this, in which case ignore me and carry on
) My wife fell victim to GBS in January 2009 with, according to the neuro specialist at QMC Nottingham, as "the worst case he had ever seen". It had taken five days from having slurred speech and a headache to being in Intensive Care on ventilation. She was to remain in ICU for over four months, followed by a year on various wards and specialist units before coming home.
She actually had Miller Fisher Syndrome, an even rarer variant of GBS. MFS typically affects the upper half of the body worse than the lower. This usually includes the lungs, hence the lengthy spell on ventilation.
Her initial treatment was intravenous immunoglobulin to kickstart her shattered immune systems. The only parts of her body she could move were her feet. At first her eyelids wouldn't shut properly, then they wouldn't open. She was fed through a tube for months.
Her unusually long spell in ICU became a benefit to the staff there, who were able to assess and characterise certain long term issues which did not usually have time to develop. One nurse used the case as part of her dissertation.Two of the ICU staff have remained friends to this day.
My wife was determined to walk again which she achieved with the help of a great physio team. She can't walk far though and still needs a wheelchair at times. She now has limited use of her hands and needs constant care which she gets from me. Her speech is still affected and she is still on medication to suppress pain and muscle spasms.
Her condition is now relatively stable but our daily lives are defined by and revolve around her needs.
GBS can affect anyone at any time and can be triggered by many things including having an inoculation or having a viral problem. In my wife's case we think that she was very run down at the time.
Our experience of the NHS through this terrible time was brilliant.
OP- my wife missed our dogs too. So we hatched a plan to wheel her outside the unit to see them. The nurses rigged up a portable ventilation system and then fitted all the other rigmarole, including heart monitor and various pumps and tubes, to the bed. She couldn't believe it. Neither could the dogs.
We both hope that you make a full recovery.
Have you any idea what may have triggered your GBS?
She actually had Miller Fisher Syndrome, an even rarer variant of GBS. MFS typically affects the upper half of the body worse than the lower. This usually includes the lungs, hence the lengthy spell on ventilation.
Her initial treatment was intravenous immunoglobulin to kickstart her shattered immune systems. The only parts of her body she could move were her feet. At first her eyelids wouldn't shut properly, then they wouldn't open. She was fed through a tube for months.
Her unusually long spell in ICU became a benefit to the staff there, who were able to assess and characterise certain long term issues which did not usually have time to develop. One nurse used the case as part of her dissertation.Two of the ICU staff have remained friends to this day.
My wife was determined to walk again which she achieved with the help of a great physio team. She can't walk far though and still needs a wheelchair at times. She now has limited use of her hands and needs constant care which she gets from me. Her speech is still affected and she is still on medication to suppress pain and muscle spasms.
Her condition is now relatively stable but our daily lives are defined by and revolve around her needs.
GBS can affect anyone at any time and can be triggered by many things including having an inoculation or having a viral problem. In my wife's case we think that she was very run down at the time.
Our experience of the NHS through this terrible time was brilliant.
OP- my wife missed our dogs too. So we hatched a plan to wheel her outside the unit to see them. The nurses rigged up a portable ventilation system and then fitted all the other rigmarole, including heart monitor and various pumps and tubes, to the bed. She couldn't believe it. Neither could the dogs.
We both hope that you make a full recovery.
Have you any idea what may have triggered your GBS?
Hi Spyder, that story is an exact copy of my best friends. He fell out of bed one morning, legs not working, was diagnosed immediately by a sharp junior doc.
He went straight into ICU and did the ventilation thing for months too, he could only move his eyelids!
He did recover, slowly, but was frail when he left hospital about a year later. He is fit and well now albeit with the occasional depressive episode.
Interesting reading about this...
He went straight into ICU and did the ventilation thing for months too, he could only move his eyelids!
He did recover, slowly, but was frail when he left hospital about a year later. He is fit and well now albeit with the occasional depressive episode.
Interesting reading about this...
My wife's diagnosis had not been immediate. We went to a Sunday GP surgery where the doc was unable to diagnose at the time. She had absolutely no reflex actions. Pupils fixed. Slurred speech. He sent us directly the acute admissions ward nearby where her condition deteriorated daily. She was transferred to the QMC where they had specialist neuro docs. They suspected GBS.
Next day she's in ICU. I got a call to get there ASAP.
She had a catheter in her hand. Catheter in her neck. Ventilator down her throat. Surprisingly, one of the pumps was delivering insulin. She was suddenly diabetic and still is!
Next day she's in ICU. I got a call to get there ASAP.
She had a catheter in her hand. Catheter in her neck. Ventilator down her throat. Surprisingly, one of the pumps was delivering insulin. She was suddenly diabetic and still is!
spyder dryver said:
OP- my wife missed our dogs too. So we hatched a plan to wheel her outside the unit to see them. The nurses rigged up a portable ventilation system and then fitted all the other rigmarole, including heart monitor and various pumps and tubes, to the bed. She couldn't believe it. Neither could the dogs.
We both hope that you make a full recovery.
Have you any idea what may have triggered your GBS?
Geoff, my heart goes out to you & your wife. And thank you for your kind wishes.We both hope that you make a full recovery.
Have you any idea what may have triggered your GBS?
In the weeks following my admittance to hospital, it's become obvious that my early diagnosis has saved me from a whole lot of additional grief.
In fact, I often feel a bit like a charlatan given how sick some of the people on the rehab ward actually are.
The medical team think that the mild viral infection (trots for a day followed by 3 days of diminishing fever-like symptoms) that I enjoyed 10 days before the onset of GBS was the catalyst.
What was weird was that for the 5 days before the first symptoms of GBS, I felt better than I'd felt in years.
Oilchange , how long ago was your mate in hospital?
BlackVanDyke said:
LA can issue blue badges at their discretion. But you qualify automatically if you receive the mentioned benefits. Get it done, it's well worth it!
My wife is going to speak to the LA on Tuesday about this. It would have been nice if the person she spoke to previously mentioned it at the time though.OP- one of the best therapies we encountered was the BTE Occupational Therapy machine in our local Physio dept. It is a device that can mimic most physical actions, including sports, using various attachments. It resists your efforts dynamically and measures your progress. It was used in our case mainly on my wife's upper body and hands. Results were excellent. Many other departments in the area were unaware that the local unit had one, or what it could do.
You may wish to find out if you might have access to one.
Google "BTE machine"
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You may wish to find out if you might have access to one.
Google "BTE machine"
Update:
I was discharged on Friday. Yay
I'm using crutches & everything is s l o w.
I've managed to establish a method for using the original over-bath shower (lots of grip tape).
I even managed to get up onto the exercise bike yesterday but my legs & arms are proper tired. Sometimes my size (height) works in my favour, other times not so much.
Rehab teams are to make contact today & I'm told a visit by the neuro lot is on for this afternoon.
All in all, I have been very very fortunate & am extremely grateful, not least for
My wife has gone back to work today albeit on slightly reduced hours. Today is the first time I've been on my own for any length of time for two months. All tickety-boo so far. Might need to phone the speaking clock later though.
Anyhoo, thanks again for all the info & kind words & emails.
Onwards & upwards!
I was discharged on Friday. Yay
I'm using crutches & everything is s l o w.
I've managed to establish a method for using the original over-bath shower (lots of grip tape).
I even managed to get up onto the exercise bike yesterday but my legs & arms are proper tired. Sometimes my size (height) works in my favour, other times not so much.
Rehab teams are to make contact today & I'm told a visit by the neuro lot is on for this afternoon.
All in all, I have been very very fortunate & am extremely grateful, not least for
- Early diagnosis & treatment
- Excellent nursing & rehab teams
- Remarkable wife
- Family (most), friends & even strangers have been fantastic & very kind
- Wife's employers in being so reasonable
- Nintendo Wii
My wife has gone back to work today albeit on slightly reduced hours. Today is the first time I've been on my own for any length of time for two months. All tickety-boo so far. Might need to phone the speaking clock later though.
Anyhoo, thanks again for all the info & kind words & emails.
Onwards & upwards!
great news
the difficult balance (maybe literally!) will be exercise/activity vs letting body recover/rest
good luck and hope things continue to improve - try not to get impatient with your body not responding how it used to
(I'm currently on my fortnightly enforced 'rest' day, 1 hour into 4 hours+ of infusion!)
the difficult balance (maybe literally!) will be exercise/activity vs letting body recover/rest
good luck and hope things continue to improve - try not to get impatient with your body not responding how it used to
(I'm currently on my fortnightly enforced 'rest' day, 1 hour into 4 hours+ of infusion!)
My friend (a fellow vet nurse) suffered this a couple years ago, went from young, fit active to not being able to walk temporarily. She is now back at work after being off several months, I think she is still part time though. She still has some mobility issues esp if she over does it but generally she is doing well.
I have nothing to add but just wanted to say your onset/ severity and now recovery matches very much hers and she is now leading, almost, her life as she was before, so I am sure you will be with yours to in time.
All the best, such a nasty condition.
I have nothing to add but just wanted to say your onset/ severity and now recovery matches very much hers and she is now leading, almost, her life as she was before, so I am sure you will be with yours to in time.
All the best, such a nasty condition.
llewop said:
great news
the difficult balance (maybe literally!) will be exercise/activity vs letting body recover/rest
good luck and hope things continue to improve - try not to get impatient with your body not responding how it used to
Spot on. Spent most of yesterday in bed, which is not good really. Not just a physical thing but I just couldn't be arsed with any of it.the difficult balance (maybe literally!) will be exercise/activity vs letting body recover/rest
good luck and hope things continue to improve - try not to get impatient with your body not responding how it used to
I've only had one day like that a couple of weeks ago & it's something I need to avoid.
I did get up when Debs got home & I did cook dinner (chilli). I felt a bit ashamed given that she's now the breadwinner & her job situation is not the best right now.
This morning I got up when she left for work at 07.30 & after breakfast, made a pie for tonight. Took nearly 3 hours. I am rubbish at rolling pastry.
llewop said:
I'm currently on my fortnightly enforced 'rest' day, 1 hour into 4 hours+ of infusion!)
Is that Immunoglobulin? How long have you been under treatment?As for the dogs, it is indeed great to be back with them. They have slipped into some bad habits whilst I was away (well they were never the most obedient anyway).
I have been over the park when Debs walks them but I'm really slow on the crutches so make a line diagonally to the opposite corner & back whilst she takes them around the perimeter so not walking with them.
I am able to play a bit of tuggy with them & when I go for a nap, they are "right" in there
Here's a pic I took the other day
Smiler. said:
llewop said:
I'm currently on my fortnightly enforced 'rest' day, 1 hour into 4 hours+ of infusion!)
Is that Immunoglobulin? How long have you been under treatment?Some of the effects include fatigue, muscle strength etc, someone else with it made a good point; you end up rationing how often you go upstairs to save the energy and pain associated with it, so I can empathise with the frustration of not being as mobile as you were.
Best of luck with your rehab, some of the other posts seem indicate there is every chance of a good recovery.
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