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The physios are working me hard and after 3 months since the onslaught of GBS, I can with help move from a low bed to the wheelchair which necessitates putting a certain amount of weight on my legs.
It’s all rather frightening as I still have little strength in my hands and arms.
My swallow is getting better and I was able to have pureed peaches and custard yesterday. Delicious, although I wished they were straight out of a tin!
I am still unable to drink and my mouth, whilst better is always very dry, but thankfully is now not like a carpet.
However I get tired very easily which I am told is a sympton of GBS. Another 5Kgs in weight lost. Looking forward to a new wardrobe! New Year sales here I come!


Today I passed the swallow test. Apricot yoghurt-absolutely delicious!

What I yearn for now is a gin and tonic with a lobster starter followed by a cold sausage washed down with coca cola. (No she hasn’t lost her marbles! – I think. Ed). However before this can happen I have been set lots of goals:

  • To be able to swallow solids,- the next step is pureed food and thickened fluids
  • To sit up,and regain arm strength so that I can turn over by myself
  • Feed myself
  • Transfer to a toilet on my own
  • Stand and walk a little

This will mean lots of physio but the really good news is that if I do as I am told, they say I should be out of rehab and home before Christmas. I can’t wait!

Now that the infection in my rig (stomach tube) is almost better following a course of antibiotics, I was able to sit on the edge of the bed and supported by a physio, she let go and I was able to support myself without falling over. She then gave me a toothbrush to hold and with a little help I was also able to open a small jar. Went back to bed exhausted.

‘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!’

Out of the blue we got the message that Jennie is now sufficiently well in terms of not needing so much nursing, to be transferred to a Neurological Rehabilitation Unit. This is a totally different environment from the Hospital where the emphasis is now on getting her body working again. Nurses, doctors, physiotherapists, occupational therapists, dietitians and speech and language therapists work as part of a team with the aim of getting patients as independent as possible. Discharge is planned to coincide with the time that the patient no longer needs to be in hospital. So is it too soon to look forward to having Jennie home by Christmas?

Keep watching this space!


September 2009
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