Mid year review

In January I referred to the ALS Functional Rating Scale (Revised) which is useful in tracking the progress of MND/ ALS. In mid 2020, before I had the diagnosis of MND, I reckon my score would have been about 44.  In July 2021 my score was 27.  By January 2022 it was 15.  Now it’s only 6.

That’s a dramatic reduction in my functional abilities; after all, at Christmas time I was able to eat and drink fairly normally.  Yet by March I was effectively ’nil by mouth’.  My left leg is nearly immobile, and my right leg is becoming weak – I can take tiny, slow steps if Sue holds both my hands to provide support.  My arms and fingers are totally immobile – my thumbs are the only digits I can move.  This means that I need help with absolutely everything, from using the toilet to scratching an itch on my nose. 

Sadly, I can no longer have showers because I’m far too unsteady and I get dreadfully breathless, so it’s bed baths only now with hair washing achieved by leaning over the kitchen sink with jugs of warm water.  Just like my mum used to do it for me in my early childhood in the 1950s.

I am now using my ventilator for around 23 hours per day. Without this non-invasive ventilation (NIV) I get very breathless and distressed, particularly when lying down or standing up.  The only time I don’t need NIV is when sitting up in bed immediately after waking up.  Wearing the face mask all the time destroys any last chances of communication. It’s also uncomfortable and can fill with secretions from my mouth.  I do feel a bit self-conscious wearing the face mask when we go out for wheelchair walks.  I do look rather freakish and can frighten young children, and dogs with a nervous temperament.

However, alongside the problems of NIV is the opportunity (at the right time) to withdraw my consent to receive the treatment (with the obvious consequence).  I have always been a highly independent perfectionist with a clear preference to be in control, with everything neat and tidy. I sometimes think this personality type (Myers Briggs INTJ) really is least suited to the chaos that MND brings.  There’s potentially an interesting research opportunity here for a psychologist.

I normally talk about places we have visited in my diary posts.  The fact is we haven’t been anywhere of interest in June.  We enjoyed watching the Queen’s Platinum Jubilee events on television, and we had a lovely time with family at my mother in law’s 90th birthday celebration the following weekend.  We also enjoyed numerous visits from family and friends – opportunities to use my TD Pilot for eye gaze communication.

On Saturday 2 July we have the great pleasure of providing the venue for a family pre-wedding garden party for our son Alex and his fiancée.  A large marquee arrives on Friday which will cover the top part of our lawn.  We are getting very excited! I’ve written a short speech for the event on the TD Pilot, which will be interesting technologically.  The words come out in rather a monotonous way, but at least people will hear my voice as banked nearly two years ago.

6 thoughts on “Mid year review

  1. Been thinking about you all day and the joy you will must have felt for your son and his fiancée today as you celebrate their engagement in the garden. I hope it was a wonderful day.

    Your diary has taught me so much. Thank you. I am in awe of your bravery and grace. It has reminded me to be constantly thankful for all the small joys in life.

    Holding you in my prayers.

    1. Well said, Sue…..you sum up all our thoughts from his friends in Exeter all those years ago ! Great to see another fond reminder of an earlier wedding in Abbotts Langley / no doubt a good time was had by all. Congratulations to the Happy Couple. Take care, Peter, Mike.

  2. Yes, definitely a masterclass in grace and dignity. Thank you for providing another detailed update; sad to read in the main but appreciate knowing how things are, especially given that the posts are increasingly difficult to write. Yes, it must all be exceedingly frustrating – especially to an INTJ!
    Congratulations to Alex – great news! I hope that you had a wonderful do, and that the TD Pilot delivered! :o)
    Sending hugs and lots of positive energy. xx

  3. Hi Peter, I’ve been following your diary because my husband’s ALS trajectory is similar, and your diary has let me know what to expect. We hope, as you and Sue do, to control as much of this situation as possible. I hope that your end of life is peaceful and that you can take joy in the fact that you have helped others—much love from the US.

  4. Just caught up on your story and the changes since the beginning of the year. It must be such a challenge for you all and not easy to cope with. I often think of you and it’s good to see and read your updates and understand more about MND.
    Great photo of the marquee and I really hope you had a great celebration.
    Thinking of you.

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