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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!

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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.

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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.

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.

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!

Whilst the swallow is beginning to come back, Jennie is still being fed liquids through a tube directly into a stomach (to avoid the risk of aspiration pneumonia the tube is still considered an essential for fluid/ medicine intake).  Yesterday the tube fell out.  It was kept within the stomach by a balloon which appeared to have burst and without this in place Jennie could not receive liquids. Fortunately the nurses were able to replace it with a catheter which kept the hole intact.

Usually Gastric tubes have a life span of about six months but not this one, so yesterday Jennie was ambulanced to the General Hospital for its replacement through the existing passage without an additional endoscopic procedure. This lasted just a few minutes and Jennie was safely returned to Rehab.

Apart from this bit of excitement very little is happening on the movement front but Jennie is perervering with her physio and elocution practice and happy that some progress is being made. However she can’t wait to get off the pureed food.

‘I am dictating this to my husband sitting in the sunshine by a pond at my new home in a very comfortable wheelchair. I was lifted onto it by the hoist over my bed. It is nice to have my own room and to have some privacy but I do miss the attention of the wonderful nursing staff and doctors at the Neuro Hospital.

It is great to breathe fresh air again but annoyed that I still have to be accompanied wherever I go by my mobile food dispenser as I failed the swallow test again. This time it was fudge yoghurt. I can’t wait for a tin of peaches I would like to eat sitting by a pool in the Carribean!

I would like to say a very big thank you to everyone who has sent messages of goodwill, prayers, cards and has visited me. All these have kept me going during this awful experience. Next week they hope to be able to give me a target discharge date. This year or next year I wonder!’

A small milestone as today all tubes have been removed from Jennie’s face and she is once again breathing without assistance. The tube in her stomach seems to have settled down with the usual feed, water and pain killers going in nicely.

The best news is that she can move her right hand up and down a little but frustratingly she is still unable to swallow.
Jennie’s big wish is now for a tin of peaches as well as a cup of tea!

With one and a half bottles of the 15 prescribed for the IVIG treatment left to run, Jenny was taken down to Theatre for a gastrostomy operation to insert a tube into her stomach. This left her uncomfortable and worried that this interruption may have some effect on the power of the IVIG juice to work its magic. Time will tell..

Later despite an early blockage in the new tube, she is sitting up and much happier with life in anticipation of the early removal of the nose feeding tube, and hoping that all the bad antibodies in her immune system have now been chased away.

The Medics have decided that Jennie’s progress is not at the rate they are expecting especially as her left arm, the first target for the GBS is showing little sign of movement.

The decision has now been taken for a second dose of IVIG treatment in the hope that this will finally drive out any remaining rogue antibodies.  This will take place over the next 5 days.  (If the web can be believed this is costing $10k because it is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together).

Lets hope it works this time.