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• THE JOURNEY IS OVER (JOURNAL 90)

  3 June, 2016

  If you were to read our journal entry for this day last year, you would read the following Today's instalment… [more]

• JOURNAL 89

  22 May, 2016

  Hi sweetheart, Sometimes I experience periods of “What if…?”. These are times when my mind seems… [more]

• JOURNAL 88

  17 May, 2016

  Hi Darling, Coming home from the hospital with a mechanical device fitted to my chest – a P.E.G. I think it… [more]

• JOURNAL 87

  13 May, 2016

  JOURNAL 87 The doctor said I can go home this morning. The surgery has had the desired effect and this new means of… [more]

• JOURNAL 86

  10 May, 2016

  JOURNAL 86 MOTHER’S DAY Hello sweetheart, I haven’t spoken to our children as to… [more]

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• JOURNAL 88

  17 May, 2016

  Hi Darling,

  Coming home from the hospital with a mechanical device fitted to my chest – a P.E.G. I think it is called – is like coming home from the maternity ward with my first new baby!! (At least I imagine that is what it is like). This PEG is a cassette filled with medication and fitted to a pre-programmed pump which delivers the medication slowly all day to those parts of the body that require this treatment.

  These last few days been daunting, to say the least.

  The PEG comes with a manual that has lots of coloured diagrams and instructions. The words “warning” and “caution” appear with disturbing frequency. “Baby’s” formula must be kept refrigerated and taken out of the fridge 30-40 minutes before use so that it is close to room temperature. Once the morning feeding programme has begun, there’s no stopping it until all the sequences have been completed. I have to make sure that none of the passages is blocked which involves a syringe bath at least once a day.

  If I get something wrong, an alarm goes off as “baby” let’s me know that something that I’ve done is unacceptable and it will cry until I fix it. That wasn’t a problem in hospital because I had the support staff and facilities on site. But now I am on my own. There is no one here to tell me to do this or that.

  You’ve probably guessed what I call this medical marvel. Yes, I call it “baby”.

  I was told that “baby” would be a source of joy and fulfilment. Maybe that’s my problem. My expectations were too many and too soon. The first action I took when I arrived home set “baby” crying. What did I do? The panic button got quite a workout that first night. Somehow I managed to complete the various tasks that would now be part of the rest of my life.

  So there are strict disciplines to be observed morning and evening. It is becoming obvious that this means a permanent change of lifestyle.  “Baby’s” presence is going to change my routines, influence my decisions, alter my holidays, impact my values and generally create mayhem. But I will be forever grateful if this new addition to our family brings a new dimension of freedom and control over Mr. Parkinson.

  But Until Then

  You remain the love of my life

  Mike