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!

Advertisements

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.

I think it is about time I did another blog.
I am not sure if it is the sunny weather but suddenly after 10 months with GBS I am feeling so much more active and wanting to do things. That is not to say I am back to normal: my hands make typing difficult and eating awkward and swallowing unhelpful. Walking is still a bit wobbly and I would not go out alone without a stick.
I can’t stop going over everything from the morning I walked out of the house with a paralysed arm until I entered a new house nearly six months later. The horrendous nightmares, the trying to work out what was real and what was imaginery, what was actually said and what was in my head. Iam sure that someone said I was not in pain (true at the time) and that I did not need medication or did I just say that to myself and could not tell the doctors as I was ventilated?
I can still vividly remember serpents coming out of the light fittings in the Intensive Care Unit ward and screaming to the nurse (this of course was in my imagination I suppose!). In the Neurological Ward I could see faces everywhere.
I am so glad that all that has stopped now.
I am still uncertain as to whether my Bulabar Palsy will recover and I would love to hear from anyone who has suffered from this condition. I thank God that I have come through this in spite of the diffficult prognosis given by the Doctors when I was first diagnosed with GBS having been told it was a stroke/ stress/ trauma when I first went to the local hospital before being transferred to the ICU in our main town. I also thank my husband for standing by me and visiting me every day and continuing to care for me at home. It is wonderful to be able to lead a near normal life with his special care of me.

After eight months, we seem to have moved from “Getting Better Slowly” to “Getting Better Slowed-Right-Down”. Whilst Jennie’s mobility has greatly improved; she is walking unaided now, her upper body and especially her arms and head remain frustratingly abnormal with much muscle wastage despite lots of physio and some exercise.

We seem now to be in the phase where she is waiting for nature to regenerate the damaged axons (electrical cables) of her peripheral nerves, a much slower and less efficient process than the repair of the insulating sheath (myelin), which we are told could take up to 2- 3 years. The axon is responsible for transmitting signals between the brain and the rest of the body and explains why the motor axon is having no effect on certain muscles.

The reality of what has happened has been made more acute by the acquisition of a new home while she was in hospital. As she says, she left the home she loved last June with tingling fingers and an arm that didn’t work. Six months later (via a stint on life support), she returned to a strange environment she had no say in choosing or fitting out etc. The inadequate kitchen compared to her pride and joy at the old house depresses her and whilst there are plans to extend it, that is another story for this blog as is the stress, strain and sleepless nights we have been through.

The emotional impact of acute GBS is now a real problem. Apart from the obvious questions of ‘will I make a full recovery’ and ‘will it recur?’ is a sense of depression and frustration as she is unable to return to her former interests and activities including card making, eating normal food and caring for herself.

Her sleep is regularly interrupted by a recurrence of the nightmares she had in hospital and difficulty in turning over in bed.

The good news is that she is pretty positive and enjoying her new slimmed down look; trying on new clothes and seeing her friends again but not from a hospital bed!

A visit to a maxillofacial consultant today. Seven months after the start of GBS, he confirmed the severity of the damage to Jennie’s lower brainstem which is the control centre for her cranial nerves 7-12. And informed her that she has a new syndrome called Bulbar Palsy.  The symptoms in Jennie’s case include trouble eating, speaking, swallowing, erratic saliva production, using the tongue and lower lip facial expression. She is also prone to choking on chocolate
and is still on a mashed pureed diet.

The good news is that like GBS, nature should in time restore the cranial nerves and strengthen the muscles in her head, indeed if you look closely you can see several indentations where the muscles have wasted away!

The bad news is that like the nerves in the fingertips, the cranial nerves are usually the last to regenerate so we are told there is still a long way to go before Jennie can enjoy a life of independency.

Six months ago the consultant took us into a small room and laid out the facts that she knew at the time.  She explained GBS, what it does to the body, what we could expect, the best and worst case scenarios (with an emphasis on the latter).  But she couldn’t answer the one question we wanted answered more than any other.  How long?  With GBS it’s impossible to say she told us.  Will Jennie be back home for Christmas?  Maybe.  But given her age, the severity and speed of the onset we left with the feeling that she would bet against it.  We wouldn’t.  Home for Christmas was to be Jennie’s goal.

—–

Jennie’s wish to spend Christmas Day with her family has come true. She has now been out of hospital for two weeks and readjusting to a near normal life after such a horrid experience of being literally struck down with GBS almost 6 months ago.

“Oooo, you do look well” vistors say as they’ve dropped in over Christmas.  Her speech is getting better, she can walk with a stick, she can eat by herself.  But there is  still a long way to go.  Walking any distance is hard and climbing steps is a still distant goal.  She has difficulty in holding a knife and fork and eating anything but the most soft of foods is impossible (she did manage Christmas dinner chopped very finely).  Flashbacks to the nightmares and hallucinations in the hospital upset her; keeping this blog has been useful as a historical record to set her mind straight as to where she was.  Her immune system remains fragile, we must hope that she avoids any complications.  A trip to the dentist revealed that there were no real problems with her teeth as indicated in the last blog.

With physio at home now a distant promise, a Wii Christmas present should be some form of motivation. Carers arrive every morning at 7 am to wash and dress Jennie, and we are very grateful for this service.

But this post today should be all about Christmas Day which Jennie enjoyed immensely. The eagerly looked forward G&T was unfortunately not to her liking but a small sherry or two certainly made up for this.  She confounded exectations and did what we dreamed of, she spent Christmas day at home in the company of her husband, two sons and grandchildren.

Jennie writes

After a long blog break, things have moved quickly. A real treat this weekend as the Hospital has let me go home on the basis that I return in time for tea on Sunday. What is even better is that I will be discharged from Rehab on Monday. All mobility aids have been delivered to the new house my husband bought while I was in hospital.

Luckily I am quite happy with our new home. My mobility is improving with the aid of a Zimmer frame but my hands only just about grasp a teaspoon to feed myself. My swallow, jaw action and speech normality have still a long way to go before I am able to eat and speak as before. The treatment I received at the hospital was first class, the physios working me hard to get me mobile. I now need action on my upper limbs and help with my grip and shoulders. After almost 6 months of minimal dental hygiene, I fear a spate of tooth extractions, although hopefully the current course of antibiotics will cure the underlying infection. This is one aspect of GBS which is not covered in the text books…

Now five months on and Jennie is still in the Rehab Hospital receiving intensive physio and group work, which yesterday included making fudge. Jennie’s contribution was in the stirring and very tasty was the finished product in the eating.

Eating is still a major problem area, Jennie experiencing difficulty in swallowing anything other than mashed food. We are told this is due to incoordination of the muscles of the mouth and throat, so that they do not work together to pass the food down into the throat. This is really getting Jennie down as she is making real progress in other areas.

She is now able to walk with her zimmer to the dining room and sit in a normal chair and is buoyed up by the fact that she is scheduled to leave hospital in three weeks time.

Jennie is getting used to transferring to/ from our car and today was driven around the city to get used to the experience.
Five months is a long time to be out of doing normal everyday things but GBS was always ‘getting better slowly’ and thankfully Jennie is now almost fulfilling the medics prognosis.

Not surprisingly she does get very emotional but is looking forward to the day when she can cross the threshold of her new home.

Jennie’s progress in Rehab is now being monitored via a modification of the Barthel Index. The Barthel Index consists of 10 items that measure a person’s daily functioning, specifically the activities of daily living and mobility. The items include feeding, moving from wheelchair to bed and return, grooming, transferring to and from a toilet, bathing, walking on a level surface, going up and down stairs, dressing, and finally continence of bowels and bladder.

The higher the score the more “independent” the person, a score of 20 being the target score. Independence means that the patient needs no assistance at any part of the task. Having started at zero 8 weeks ago when Jennie was totally dependent on the nurses for all these functions, she is now scoring 6 which is giving her lots of encouragement. With less than 30 days before her forecast discharge date, the magic 20 score seems a long way away. Everyone at the hospital is doing what they can, especially in terms of nursing care, physio and OT to make this happen by the due date.

The staff are just fantastic as is Jennie.

Four months on, and Jennie today took her first tentative steps. Three steps forward with lots of huffing and puffing and then 3 steps back with no huffing and puffing, the seat behind her acting as a magnet!

Real progress is now being made with Jennie able to swallow fluids, eat soft food and transfer on a banana board from her bed into a wheelchair.

Still a long way to go as her left arm remains very weak and little grip with either hand. Having said this she has mastered the art of turning the pages of her magazine collection with her good right hand and is reading again and changing channels on the TV in her room.

Another milestone!