Three Years On

It is now three years since I came out of hospital after a six month stay to a new house and on the way to getting better.
I was using a walking frame, could hardly feed myself or wash and dress. It was great being home albeit to a new strange environment and quite soon I was able to walk unaided in the house. However I have not made a full recovery and still suffer fron the following affects:

My feet still feel uncomfortable and quite often my legs don’t work that well. I need a wheelchair for any distance outside and don’t feel safe anywhere on my own.

My hands are not as strong as before meaning that writing and typing are difficult and opening tins and squeezing bottles a non starter. I get quite a lot of cramp all over my body.

The most affected part is around my mouth and jaw which affects my ability to eat. I can now only cope with soft or very crisp food although chocolate is still my favorite!

Though my speech (I am told) is normal, I do not find talking in a natural fashion easy, as I have to annunciate my words very carefully. Luckily or unluckily that does not stop me talking!

I get tired very quickly and have to sit down after not very much activity or just standing. However I really can’t complain as life is pretty normal and though I am excused most duties in the home, I do do a bit of cooking and love making greeting cards. I can go out and meet friends, take caravan holidays and go cruising.

I am lucky to have a wonderful husband who is always ready to listen to my memories of hospital and the hallucinations and is sometimes able to say that I did not imagine certain things.

I hope my blogs have been of help and have shown that there is hope even though the whole experience of GBS is so awful and indeed frightening at the time. I find the memories are never far from my thoughts especially on sleepless nights!

A happy Christmas and healthy New Year to all my readers.

GBS = God Blest Syndrome…

On a recent visit to New England, I attended a mass at St Christopher’s Church York. http://www.stchristopheryork.com/church.html
This is a lovely modern Church with some stunning stain glass windows, a one lady choir with the voice of an angel and a charismatic pastor, the Rev John Skehan.

The service brought home to me the seriousness of my illness and unknown to me my sons organising the last rites in the early days of my paralysis. This must have influenced my mind to adopt Rev John’s slogan of ‘let go, and let God surprise you’.
I certainly let go, I couldn’t do anything else given the state I was in and the activeness of my mind.

And God did surprise me by the restoration of my health to near normality.

It’s interesting to read of other fellow sufferers experiences and still feel lucky that I had minimal pain as a result, I suspect, of excellent nursing, although I am unable to stop my mind going over the experience I had especially the hallucinations. Luckily my husband does’nt mind hearing the same story over and over again!

Almost three years on from the outset of GBS and I am able to dress and undress myself, if a little awkwardly with the need of a low armless chair.
I am able to travel and am extremely grateful for the assistance shown towards disabled passengers on all the forms of transport I use. So fellow sufferers and friends, remember that this is truly a God Blest Syndrome. at least it was for me.

Residual Effects of GBS and Current Research.

To escape at least part of our winter we have just returned from a cruise to the Caribbean and States. We had a wonderful time and met some lovely and interesting people.

The downside, which seems to be ongoing, is my great difficulty in eating a plateful of normal food and people fully understanding what I am saying. My jaw seems to have a mind of its own!

Whether this is down to the incomplete repair of the myelin sheath (remyelination) of certain injured nerve fibres ie the axons in my body, nobody seems to know. What is now coming to light however, is that incomplete remyelination could have reduced the efficiency of electrical impulse transmission through two of my cranial nerves in the lower part of my head resulting in the jaw and speech problem I am currently experiencing. It will be three years in June since I contracted GBS.

I have recently read that research in the States has discovered that as Dalfampridine can help improve the walking of MS patients by halting the demyelination in the Central Nervous System, it is plausible that it may also help those GBS patients with residual weakness and sensory loss due to incomplete remyelination.

Hopefully this research can be taken forward in the UK with an early clinical trial to determine whether there is any benefit . At present Dalfampridine cannot be prescribed except for MS patients.

I am getting fed up with not being able to eat what I want and having to watch how I eat when I am in company. Also friends understanding what I am saying. Still things could be a lot worse, and I count myself to be lucky how well I have come through compared with some fellow sufferer’s experiences.

A few more thoughts…

Life is almost back to normal, and whilst I am about 95% better than this time 2 years ago, when I still had to be hoisted in and out of bed and was intravenously fed, my sleep is now interrupted with pain in my legs which disappear when I get out of bed. However during the day I experience spasms and cramp in various parts of my body but thankfully no tingly fingers which was the main symptom of the onset of GBS.

I also wake up with a tongue that seems far too big for my mouth! but It does get a little better during the day.

At the moment I am making Christmas cards ( a hobby I love), but cannot do it for too long as my hands get cramped and feel like cotton wool. Even though it is a sedentary occupation I feel very tired after 2 or 3 hours.

I still have to use a wheelchair if we are going any distance, though I offer to push myself uphill when the going gets tough for mbm! I need something to lean on when walking and am terrified of steps when there is no guardrail..

Every day I count myself very lucky that I have survived GBS so well and even now there are some small improvements after over 2 years.

I think that’s all for now.

Two Years of Progress.

Time for another blog after 2 years on from the start of GBS.

Everyone says I have made a miraculous recovery, but I knew I would as my eldest son told me this after GBS was confirmed. He read all he could on the subject on the internet and assured me I would get well in 6 weeks, and I believed him!

As time went on I realised it would take a lot longer and when I left rehab after 6 months, I could just about walk with a zimmerframe, turn the page of a book with difficulty and feed myself with a spoon.
Once at home with my ever patient husband, I think things got easier in leaps and bounds- even in a new house!

When the sun came out last June it seemed to me that it was time to improve even more and become more interested in everyday living and organising the home to my fancy (I think most wives organise the home!)

So where are we now?

We celebrated our 40th wedding anniversary with friends and family last month and yesterday evening spent drinking champagne with strawberries and cream on a warm Summers evening on board a Silhouette yacht just bought by my husband and a neighbour. we watched all the activity on the river including the ferries coming in and out and then had fish and chips in our garden round our new table, the garden lights coming on at dusk.

Today we are discussing the purchase of a water feature. Last month we spent a few days in our new caravan in France (in the rain)! I am glad I didn’t pay any attention to the advice I received when I was ill to sell the caravan as everyone thought I would never be able to enjoy it again.

Of course I know I am lucky that I am so well and can lead an almost normal life but I can also complain that I still cannot walk very far- eating is still very difficult as my teeth do not meet together so chewing food is impossibe. Its tough that two of my favourite foods are meat and nuts!. I am wondering if this problem is not GBS related at all and could have been caused by the ventilator tubes?

My hands feel like sandpaper and do not always function as required- my grip is not strong and my hands are “trembly”. I still have problems dressing myself.
But I cannot complain too much as I have made such a wonderful recovery from such a terrifying ordeal.

My thanks to everyone who has followed this blog.

Cruise Rehab!

What have I been doing since I last did a blog over three months ago?  Well I have been on a three-month rehab (as M says) round the world cruise.  We left Southampton in early January and sailed to the Caribbean, through the Panama Canal, on to New Zealand, Australia, Hong Kong, Vietnam, Singapore Mumbai through the Suez Canal, Athens, Rome and home.

I tried to do more exercise by walking  the deck when the ship was not pitching and certainly feel better and ready to get on with my life – doing more cooking and housework [!].  During the cruise I obviously spoke to people and explained what is wrong with me and not surprisingly very few people had heard of GBS except those who worked in Medicine.  However I met one lady whose uncle had contracted GBS in his eighties and made an excellent recovery, only to climb a ladder to clean gutters and had fallen off the ladder but had recovered pretty well from that. Also another lady whose cousin was still paralysed after five years – how lucky am I.

I still have a big problem with eating as my jaws are not in alignment and therefore I cannot chew properly meaning that I have to more or less suck my food. Unfortunately that does not seem to be getting any better. Its all, I am told by the medics, to do with proprioception in  relation to the mandible and masticatory muscles. Apparently this “phantom bite” scenario is extremely rare in cases of GBS and it would be encouraging if there is anyone out there doing any research on this.

Having said this  I tried acupuncture during the cruise but am not too sure that it made much difference except that my jaw became a little less stiff. I will probably try it again.  My hands are still a bit stiff and they feel as if they are covered in oil and sand.  Walking far is still a problem but then it was before GBS,  so I use a wheelchair.   I would certainly recommend a cruise as an ideal rehab holiday. The crew on the ship we were on were so helpful especially the waiters who tried to see that I had a suitable diet (!) even cutting up my meat if I chose that from the menu. Unfortunately  I invariably left most of my food (being very slow to eat I tend to stop eating when other people have finished) but I was always asked  if I wanted anything else.  I was nervous at the start of the cruise as my eating can be a problem and eating with strangers might have been embarrassing as you quite often have different people on the table but it was OK.  Thank you fellow cruisers!

I hope we have warm summer as the heat was certainly of benefit and thank you all for reading this blog.

Ups and downs!

In hospital Jennie was regulalry reviewed by counsellors as two of the side effects of GBS are strong emotional reactions and fatigue.  Whilst the later is not too much of a problem, the euphoria of trying to return to a more nornal life is proving difficult with Jennie very emotional when she meets friends she has not met for some time, or visiting previously familiar places.  This is normal with the rehab hospital providing support if required.  But a trip to grandchildren in London brings the realistion that she has not made that journey for eight months.

When will it end? Eighteen months on.

The past year has rushed by with Jennie acclimatising herself to life outside hospital and to her new home. Progress, whilst slow has been positive inasmuch as she can now lead a more or less normal life apart from
a) her speech not feeling ‘natural’
b) ongoing difficulty in chewing
c) her tongue feels too big for her mouth and presses against the insides of her upper and lower teeth
d) Her jaw is ‘out of alignment’ and feels very stiff
e)discomfort and cold sensitivity on her back teeth on both sides, giving Jennie semi permanent toothache, her dentist is unable to explain and
f) hands which are permanently uncomfortable

Her Maxillofacial Consultant has told her that all these symptons are explicable in terms of her GBS and that Jennie’s case is rare inasmuch as her proprioception has become altered in relation to her mandible and masticatory muscles.
In other words the nerves that fire up the muscles that supply information about how she should move her jaw up and down are still damaged giving rise to the overall discomfort and frustration about eating and talking normally. All this she says ‘is now slightly annoying’.
However he still feels there is room for improvement in these areas and that there is no underlying problem with her teeth.
As with all sufferers of GBS we have come to realise that one has to be patient and that hopefully next year will see some further improvement in her mouth-jaw and speech, and her hands.
So little is known about this condition that always we are told that any cure is in the hands of nature and that no treatment is available or appropriate.
Slowly slowly…..

Looking Forward..

I think it is about time I did another blog. A couple of weeks ago I saw a consultant who said that I was doing well and that 18 months is the target time for repair of the mylene sheaf covering the damaged nerves. At the rate of 1 millimetre a day which is only 0.0032808 ft this is painfully slow but there is nothing that can be done to speed up the process. I am learning to live with my hands and mouth in a permanently uncomfortable state and am counting the days to Christmas which will be 18 months since GBS started in the hope that by then things will be much better. The big question is, if all is not normal by then, does it mean that’s it, or does one continuously improve after 18 months?

We are busy with an extension to the kitchen with completely new units which will be fab when all finished and I can sit there and cook and watch TV. Again as my hands are so weak the Christmas deadline is even more important from a cooking perspective.

We have also been meeting up with fellow caravanners who have not seen me since I got GBS but they have been kept informed via my blog. I think they were surprised that I have not changed too much except for my mouth and difficulty in eating anything solid, and that I can walk, albeit only a very short distance. My main blessing is that I can talk reasonably well and laugh and enjoy the company of so many old friends. This month I am meeting up with three of my oldest friends, one I have known since childhood, another who now lives in Australia and the third I met whilst working in Paris in the 1960′s. I will have to brush up on my French but I will enjoy that.

So that is more about us and less about GBS which means I must be getting better,  but its ever so slow!

Exactly One Year with GBS

It is exactly a year since I walked out of the house on a Monday morning with a stiff arm and by Tuesday midnight I was in intensive care. Three months in ICU and three months in rehab and I expected to be 100% cured. I know that I am very lucky – well I am still here to tell the tale.
I don’t remember much about ICU except for the bad dreams but I do remember friends visiting and yesterday one of those friends said that she had not expected to be out walking at all. At least I can get about despite my legs being still a bit wobbly. I think I am only about 75% back to normal. It certainly is GBS getting better ‘slowly’, and at least I am not in pain.
I am still not able to wash and dress myself totally and though I can sort of write with my right hand I cannot hold my fingers out straight and cannot lift my arms very high so cupboards are a no no…. Getting toothpaste out of a tube or lotion out of a bottle are impossible – my right shoulder hurts when I lift it too high – I have had one steroid injection but probably will need another. But it is my head that really suffers! I lisp because my tongue seems too large for my mouth, which makes chewing difficult. I am still really on a soft diet though I do try crisps etc (nice unhealthy things!) but salad gets stuck (not enough saliva), meat gets swallowed in too large lumps and gets stuck with uncomfortable results. Bread gets sucked (uuggh) but I hope that will eventually improve. The nearest I have got to cooking is to open a tin of baked beans and put the bread into a toaster!
All in all I did not expect to be incapacitated for so long but when I left rehab I realised it was going to be a long haul and at the age of 71 feel I have made a good recovery and hope it continues. With a wonderful husband and family I can count myself very lucky.