Week 8
Dear family and friends,
Thank-you for all for your wonderful e-mails and comments on the blog. They have really kept me going. I wanted to update you on two major events for me this week. The other day, with the help of the speaking valve, on the ventilator, my voice suddenly returned from a whisper to a clear voice. Secondly, my swallowing has returned, meaning that I have been able to enjoy sips of water and, most importantly, nibbles of chocolate! As you can imagine, my life has been relatively transformed by these events.
My arms and legs are still very weak, and I am still requiring the ventilator, so I can see there is still a way to go, but there is now a glimmer of hope on the horizon as things have started to improve. I really wish I could use my hands but will have to wait for that….
Being able to communicate fully with the nurses, doctors and my visitors has changed my world here. The plan is to try and wean me from the ventilator during the daytime, but I am still needing full ventilation at night. I will remain on ICU for the foreseeable future (at least until I don’t require the ventilator).
As soon as I get off ICU I can have more friends to visit which will be fantastic. Until then I’m pretty much stuck here but I’m staying positive, thanks to my wonderful husband, mum, dad and my sister Susannah.
All my love,
Laura
Tuesday, 27 January 2009
Wednesday, 14 January 2009
a message from Laura 14th January 2009
Dearest Friends,
I just wanted to update you and to thank everybody for their wonderful cards and presents. This is the first e-mail that I’ve written (well John’s writing and I’m dictating/whispering) since I was admitted to Intensive Care (ICU) 5 weeks ago. Most of you know I’ve had unbelievably bad luck and have come down with Guillain-Barré syndrome following a tummy infection that has led to me being paralysed from the neck down. I’ve needed to be on a ventilator to help with my breathing.
It all started at the beginning of December. I initially thought I had ‘flu. I was presenting at a conference and feeling extremely tired and it was pointed out that I was having difficulty walking in high heels. The next symptom was that I couldn’t finish my supper at my favourite Thai restaurant. The following day I developed foot-drop, tingling fingers and weak arms. I had a suspicion what was wrong. I was due to go back to Paris that night (for the final month of my fantastic year doing research there) but luckily I didn’t. Alex Leff, John’s brother-in-law (and a consultant neurologist) confirmed my fears and I was admitted to the Royal Free hospital that night.
Following admission on the Sunday night, my weakness got dramatically worse and, for those of you who want to know, my vital capacity fell to 1.2 litres over about 16 hours. I was admitted to ICU, intubated and ventilated and, well, here I am. The first couple of weeks were the worst, with the combination of nerve pain, abnormal bowels and temperature control, and of course the weakness. I won’t go into more details for now but I think that in the last week, I have started to improve. I’m getting some control back in my legs and my right hand. My pain is under control and I’m generally feeling a little bit better. The next phase is all about recovery of my muscles as the myelin starts to be regenerated…..but this process is unbelievably slow. The first step I need to get through is getting off the ventilator.
As I’m sure you can all understand, I haven’t really been up to having visitors quite yet. Your cards and well wishes have really kept me going. It’s been so amazing and so lucky to be so near to my close family. John has been given time off from work, and to be honest without him here every day, I don’t know what I would have done.
When I am strong enough to get off the ventilator I hope I will go to the neurology ward here at the Royal Free, and ultimately I think the plan is for me to go to rehabilitation at Queen Square neurology hospital in town. I think while I’m on ICU I’m not really up to having many visitors, but hopefully I will after that- I can’t wait until that time!
Until then, it would be wonderful to hear what everyone’s up to. John is able to check my emails and he can bring me the printouts. I have to stay positive although to be honest, as you can imagine, it’s hard at times. The team of nurses and doctors here at the Royal Free have been absolutely amazing, and I can’t begin to tell you what it’s been like being ‘on the other side’ – I’ll save that for another e-mail.
This experience has just reinforced my love of life, and when I get out of here, there is so much I want to do. I’m sending everybody all my love, and for those of you that know John well enough please feel free to take him for a drink – I’m sure he needs it!
See you soon hopefully
All my love
Laura
I just wanted to update you and to thank everybody for their wonderful cards and presents. This is the first e-mail that I’ve written (well John’s writing and I’m dictating/whispering) since I was admitted to Intensive Care (ICU) 5 weeks ago. Most of you know I’ve had unbelievably bad luck and have come down with Guillain-Barré syndrome following a tummy infection that has led to me being paralysed from the neck down. I’ve needed to be on a ventilator to help with my breathing.
It all started at the beginning of December. I initially thought I had ‘flu. I was presenting at a conference and feeling extremely tired and it was pointed out that I was having difficulty walking in high heels. The next symptom was that I couldn’t finish my supper at my favourite Thai restaurant. The following day I developed foot-drop, tingling fingers and weak arms. I had a suspicion what was wrong. I was due to go back to Paris that night (for the final month of my fantastic year doing research there) but luckily I didn’t. Alex Leff, John’s brother-in-law (and a consultant neurologist) confirmed my fears and I was admitted to the Royal Free hospital that night.
Following admission on the Sunday night, my weakness got dramatically worse and, for those of you who want to know, my vital capacity fell to 1.2 litres over about 16 hours. I was admitted to ICU, intubated and ventilated and, well, here I am. The first couple of weeks were the worst, with the combination of nerve pain, abnormal bowels and temperature control, and of course the weakness. I won’t go into more details for now but I think that in the last week, I have started to improve. I’m getting some control back in my legs and my right hand. My pain is under control and I’m generally feeling a little bit better. The next phase is all about recovery of my muscles as the myelin starts to be regenerated…..but this process is unbelievably slow. The first step I need to get through is getting off the ventilator.
As I’m sure you can all understand, I haven’t really been up to having visitors quite yet. Your cards and well wishes have really kept me going. It’s been so amazing and so lucky to be so near to my close family. John has been given time off from work, and to be honest without him here every day, I don’t know what I would have done.
When I am strong enough to get off the ventilator I hope I will go to the neurology ward here at the Royal Free, and ultimately I think the plan is for me to go to rehabilitation at Queen Square neurology hospital in town. I think while I’m on ICU I’m not really up to having many visitors, but hopefully I will after that- I can’t wait until that time!
Until then, it would be wonderful to hear what everyone’s up to. John is able to check my emails and he can bring me the printouts. I have to stay positive although to be honest, as you can imagine, it’s hard at times. The team of nurses and doctors here at the Royal Free have been absolutely amazing, and I can’t begin to tell you what it’s been like being ‘on the other side’ – I’ll save that for another e-mail.
This experience has just reinforced my love of life, and when I get out of here, there is so much I want to do. I’m sending everybody all my love, and for those of you that know John well enough please feel free to take him for a drink – I’m sure he needs it!
See you soon hopefully
All my love
Laura
Monday, 12 January 2009
Tell everyone
As I'm sure you are all aware, Laura is currently quite poorly. She is battling Guillain-Barre Syndrome at the Royal Free Hospital.
A friend of mine suggested creating a blog to enable John and her family to update us all on her condition, and also to create an e-space to jot down ideas, well wishes, stories, photo's etc for Laura so that when she is strong enough, she can read it, have a laugh, and hopefully contribute herself.
Technically, if anyone has ANY blog tips, please send them my way! I'm a virgin-blogger.
Also, please send emails to anyone who would be interested in contributing--I've only a few email addresses.
Look forward to endless natter.
Hannah
A friend of mine suggested creating a blog to enable John and her family to update us all on her condition, and also to create an e-space to jot down ideas, well wishes, stories, photo's etc for Laura so that when she is strong enough, she can read it, have a laugh, and hopefully contribute herself.
Technically, if anyone has ANY blog tips, please send them my way! I'm a virgin-blogger.
Also, please send emails to anyone who would be interested in contributing--I've only a few email addresses.
Look forward to endless natter.
Hannah
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