Dear All,
I am writing this blog update with my new (life-saving) computer voice-activated software: as some of you may know, I can't type using my hands, so I've been set up with a rather fab headset - apparently I look like a worker in a call-centre..! My previous blog scribe and wonderful husband John has fully gone back to work... and as I slowly recover, I am becoming increasingly independent, especially with the use of the computer and telephone. It's incredible to think that for the last four months I was in a total communication black hole -- and how much we rely on electronic means to stay in touch with the real world..
Despite my technology adjuncts, I'm sorry there has been such a delay in blog updates: the last time I wrote was when I was still in the Royal free Hospital over eight weeks ago.
I have now well and truly settled into my new life/regime ('boot camp' wasn't far off the mark...) at Queen Square's neuro rehabilitation ward. I can't say I'm enjoying myself, but I suppose that's not surprising ... although I know that I definitely am lucky to be alive. I have been counting the days until I am strong enough to go home...I can't wait, and it's even better now that summer looks like it is on the way: I definitely missed the worst of the English weather when I was on ICU! So, I am now 8 weeks into rehab, and apparently in 4 weeks, all being well, they plan to release me... hopefully to go home, with a 'package of care' ( i.e. people to help me get out of bed etc..)
When I arrived here at Queen Square rehab, I'll be honest, it was all rather unsettling: I will never forget the day that I first arrived - by ambulance transfer from the Royal Free. I was left waiting in a big day room, surrounded by other patients in wheelchairs. Because of my limb weakness and wasting, I was unable to do anything until somebody came to help me. I sat there in disbelief that this was going to be my life for an uncertain amount of time. It definitely has taken me a long time to accept that I have (at least hopefully, a short-term) disability, and all the things that come with that: I have no independence. I cannot wash, dress myself, clean my teeth, have a shower, get out of bed... In terms of medical things, I was fortunate that all my tubes and catheters were removed before getting to rehab, so at least I was free in that sense.
The weeks are passing very slowly, but I can now see that things are getting better. I have to be honest, it has been really hard. Of course it is a million times better than being on ICU, but it's challenging in completely different ways. I am so dependent on people around me helping me with every function, while at the same time, my mind feels absolutely normal. It's like being trapped inside a useless body. I'm surrounded by incredible people -- both other patients (there are 18 of us, some with strokes, multiple sclerosis, Parkinson's, post-neurosurgery, and even some with GBS) and of course the therapists here (physiotherapists mainly) are fantastic and so so patient. I spend my days in the physio gym trying to strengthen the muscles that I have, and to wake up muscles that have wasted. It is so tedious, but I have no choice.
While I'm waiting for my nerves and muscles to regenerate, I have been very lucky to be in such a central London location, and have so many wonderful friends to visit in the evenings. From the second week here, they have allowed me escape every weekend to stay with John at my parents new flat in East Finchley, which is totally luxury compared to the hospital..! and of course, wheelchair friendly. My weekends have been spent taking everything in that I used to take for granted, just hanging out in north London, and spending hours and hours of magical time with my family and my wonderful husband. John has rather drawn the short straw though, as he is now back to working full-time all week, and has to work pretty hard every weekend looking after me - apparently I'm a full-time job too!
So, I'm taking things day by day. The team here have been fairly optimistic about my recovery, although in terms of months to years rather than weeks to months. Of course, I also know that the prognosis is good in the long term, but there are always some people who have residual problems (about 5 to 10%). The consultant here is extremely experienced, and has seen many cases of GBS. She thinks I should more or less be able to go back to do whatever I wanted to do, careerwise, although it may be a long time off. Of course that is fantastic, but one thing she couldn't be sure about was my manual dexterity and strength, as that is often a long-term problem with this condition. She has often seen manual labourers who cannot work, and had a case of a chef who could not lift oven trays. She thinks that some of the manual skills I will need to have in the near future may be difficult (including intubating and bronchoscoping, both of which require quite a lot of strength as well as dexterity).
I'm obviously starting to wonder how I will go back to work, and what exactly I will do. My hands and arms will most likely be a problem, but at least I've got my mind and my concentration, and with the help of my headset I can use a computer with no real problem. In fact, my typing is better than ever was using my hands! I suppose I'm lucky that there are quite a few aspects to work, and I'm hoping to create something I can do. I am working on the computer now in my spare time, catching up with projects I was halfway through, and thanks to the Internet, I am in touch with colleagues in Paris and London, and effectively working - it's amazing, and keeping my mind active is definitely keeping me sane! John has gone back to work full-time at UCH, and it is wonderful for him to have some normality back. He has wonderful colleagues, and they have been so supportive.
So, if all goes to plan, I will be moving back to north London at the end of May, & until then, I'm here at Queen Square all week.
We are planning to go to Spain in mid June for a week with my parents, and stay in their ground floor flat -- I can't wait! It's going to be an amazing moment when John lowers me into the paddling pool.. although I'm a little bit scared as I can't lift my arms up at the moment, let alone swim! I think I may invest in a sturdy pair of arm-bands..
Thank you to everybody for being by our side through this horrible time, and, with the spring coming, my recovery is going to happen - in fact, it is happening!
Lots of love,
Here's to the rest of 2009 - it's just got to get better!
laura
PS In case I don't blog again, I'm now back on my normal e-mail and phone:
lauracprice@hotmail.com
07947 597 602
...It would be lovely to hear from you!
Monday, 27 April 2009
Thursday, 19 February 2009
Update 4
Dear friends and family,
I have big news! On Monday night I left ICU and am now on the Neurology ward at the Royal Free, 6 East. My tracheostomy was removed last Friday, and after good progress over the weekend, the ICU team were happy that my breathing was safe, and so here I am.
I took my first trip outside the Hospital grounds on Monday to Queen Square for my neuro-rehabilitation assessment. The trip was a great success. The team want to take me there in two weeks’ time for intensive rehab, and this is much sooner than I had anticipated as I’m still incredibly weak. They can keep me there for up to 6 months as an in-patient, and have been very optimistic about my prognosis in terms of getting me home.
I am just realising, however, that despite getting through the most terrifying 70 days on Intensive Care, and making amazing progress to get to this point, I have a very long way to go. My arms and legs feel like lead, and I can’t lift up my arms or use my hands at all- I feel like a rag doll. They tell me that some of the nerves may take up to a year to regenerate....
I have been starting to do some proper physiotherapy and it’s really opened my eyes to what they do, but how far I’ve got to go. John will probably go back to work once I’m at Queen Square and I will miss him during the day so much, but I realise it’s necessary, and how lucky I’ve been to have him by my side through the illness so far. After 4.30pm during the week and all weekend I’m allowed visitors at Queen Square, and I can’t wait to see everybody.
Lots and lots of love,
Laura
I have big news! On Monday night I left ICU and am now on the Neurology ward at the Royal Free, 6 East. My tracheostomy was removed last Friday, and after good progress over the weekend, the ICU team were happy that my breathing was safe, and so here I am.
I took my first trip outside the Hospital grounds on Monday to Queen Square for my neuro-rehabilitation assessment. The trip was a great success. The team want to take me there in two weeks’ time for intensive rehab, and this is much sooner than I had anticipated as I’m still incredibly weak. They can keep me there for up to 6 months as an in-patient, and have been very optimistic about my prognosis in terms of getting me home.
I am just realising, however, that despite getting through the most terrifying 70 days on Intensive Care, and making amazing progress to get to this point, I have a very long way to go. My arms and legs feel like lead, and I can’t lift up my arms or use my hands at all- I feel like a rag doll. They tell me that some of the nerves may take up to a year to regenerate....
I have been starting to do some proper physiotherapy and it’s really opened my eyes to what they do, but how far I’ve got to go. John will probably go back to work once I’m at Queen Square and I will miss him during the day so much, but I realise it’s necessary, and how lucky I’ve been to have him by my side through the illness so far. After 4.30pm during the week and all weekend I’m allowed visitors at Queen Square, and I can’t wait to see everybody.
Lots and lots of love,
Laura
Tuesday, 10 February 2009
Week 9 update
Week 9 update (day 60 on ICU)
Dear friends and family,
Over the last two weeks things have at last started to really improve. They say that the first movements that come back are those that you lose last, and that’s exactly what’s been happening. Two weeks ago I got my proper voice back and I started eating again....and almost immediately I was able to start needing the ventilator less and less. Last week I was able to leave ICU with just John and one nurse and go down to the Royal Free coffee shop for the first time and order myself a hot chocolate (John paid!). Since then I haven’t looked back.
Today is the first day that they will let me spend 24 hours off the ventilator completely, and if all goes well, they will hopefully take my tracheostomy out later in the week. I am so excited- as you can well imagine. The only downside is that my arms and legs are still very weak, and I’m unable to do anything for myself, as I can’t use my hands at all (I can’t even turn a page). Despite this frustration, I am so pleased because I can see the light at the end of all this. Previously, I was finding it so hard because I couldn’t see that I was improving at all, and I thought I would never be able to get out of ICU.
If all goes to plan, I will (fingers crossed) leave ICU soon and go to the Neurology ward upstairs here at the Royal Free. I will then hopefully be transferred to the neuro-rehabilitation ward at Queen Square Neurology hospital, where the really hard work starts....the term “boot camp” has been used to describe the intensity of the physiotherapy régime there!
Thanks again to everyone for the ongoing e-mails, blog comments, cards, presents and love that have kept me going through this.
Speak soon
Laura
Dear friends and family,
Over the last two weeks things have at last started to really improve. They say that the first movements that come back are those that you lose last, and that’s exactly what’s been happening. Two weeks ago I got my proper voice back and I started eating again....and almost immediately I was able to start needing the ventilator less and less. Last week I was able to leave ICU with just John and one nurse and go down to the Royal Free coffee shop for the first time and order myself a hot chocolate (John paid!). Since then I haven’t looked back.
Today is the first day that they will let me spend 24 hours off the ventilator completely, and if all goes well, they will hopefully take my tracheostomy out later in the week. I am so excited- as you can well imagine. The only downside is that my arms and legs are still very weak, and I’m unable to do anything for myself, as I can’t use my hands at all (I can’t even turn a page). Despite this frustration, I am so pleased because I can see the light at the end of all this. Previously, I was finding it so hard because I couldn’t see that I was improving at all, and I thought I would never be able to get out of ICU.
If all goes to plan, I will (fingers crossed) leave ICU soon and go to the Neurology ward upstairs here at the Royal Free. I will then hopefully be transferred to the neuro-rehabilitation ward at Queen Square Neurology hospital, where the really hard work starts....the term “boot camp” has been used to describe the intensity of the physiotherapy régime there!
Thanks again to everyone for the ongoing e-mails, blog comments, cards, presents and love that have kept me going through this.
Speak soon
Laura
Tuesday, 27 January 2009
Second update
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
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
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
Subscribe to:
Posts (Atom)
