9 Nov, 2021

250 up ….

Giving myself a small pat on the back.  This is the 250th blog post.

They’re not so frequent these days, as the illness increases the exhaustion and reduces the capacity to type, now more-or-less one-fingered.  It’s all slow, frustrating and tiring.

Being in reflective mode for much of the time – not so surprising given my current situation – I’ve started marvelling again at how much our British National Health Service has given me.  I’ve just re-read the 8th blog post, “Heroes and more on April 8 last year, where I paid tribute to the NHS.  The 19 months since then have provided so much more.  This might be tedious to read, but listing it all has been a helpful exercise for me.

First, location.

I reckon I’m very fortunate in living where I live.  My local doctor, who has made home visits when needed, is five minutes’ walk from the flat.  That’s normal walking speed; I would take 20 minutes now.  The pharmacy is two minutes’ walk, and they’ve brought medicines to the door when needed.  The Westminster Neuro Service team – speech therapist, physiotherapist, occupational therapist, dentist, podiatrist, dietitian – is 15 minutes’ walk.  Then there’s the representative from the local hospice who advises on palliative care if needed. The National Hospital for Neurology and Neurosurgery – my consultant MND specialist doctor, MND specialist nurses, consultant Respiratory specialist doctor – is 20 minutes in a taxi.  We’re all on first name terms and they generally take the initiative to catch up and arrange meetings.

Second, the medicine.

Britain has approved only one for MND/ALS – Riluzole which is supposed to extend life expectancy. The other things I have to take are to help me cope with the awful effects of the disease: Botox injections to reduce saliva; H.. skin patches and G.. liquid for the same purpose; O.. to ease a urinary problem; Z.. and L.. to help me sleep…; L.. to reduce reflux.

Third, the nutrition.

It’s now a year since the successful PEG operation after which all nutrition has had to be in liquid form, and that means six 200ml bottles of Ensure per day.  More than 2000 so far, all provided by the NHS.

And last, the equipment.  Gosh! Where do I start?

  • two hand rails over bath and shower
  • a shower seat
  • an extra-wide powered hospital bed, electronically raised and lowered, with head and foot ends raising also
  • a walking frame
  • an adjustable walking stick
  • two head-raise collars
  • a push wheelchair (I rent the powered one)
  • a suction machine to try to dredge up liquids blocking the windpipe
  • a leg splint to lift my trailing left foot
  • coded key boxes in the building for emergency services
  • a remote control door-opening mechanism so I can let people in
  • a wrist-worn alarm button to call the emergency services
  • special cushions to cope with long periods of sitting
  • a large “wedge” to go under the knees in bed to help me to sit upright (to drain any thick liquids in the throat) and not slide down

We pay for the NHS by general, not individual, taxation, so in effect the services are free of charge to those who receive them.

I’ve lived a fairly healthy life. I haven’t needed much until the MND/ALS chose me for its torment.  Nothing can stop it spreading but the NHS has been magnificent in helping me to cope.  I pay tribute again.


  1. Firstly, I think you deserve a very big pat on the back for reaching another milestone with this incredible blog.You have kept it going through so many of trials and tribulations and, now, with ever increasing difficulty.
    Thank you, as ever, for helping us to understand the complexity of the illness. We are so grateful that you have the many specialists needed to support you so close to home. And that you’ve therefore been able to stay in your lovely home. So grateful as well, for the wonderful care that Tim provides
    I salute the NHS, too, but most of all I salute you and your amazing resilience and courage! xx

    • As mummy as said, a huge pat on the back for you Dave…for writing the blog through all that you are faced with, for your continued bravery, your humour and for teaching us all so much, both factually and emotionally. Thank you. And thank you to the NHS for providing so much for you. Sending so much love, Cam xxxx

    • Amen to all that.

  2. There are very special people on this earth who are sent to us to show the rest of us the way. You are one such extraordinary person and we are so much richer for your example and courageous contribution. This is what really matters in our lives. Thank you David xx

    • So beautifully said, Charlotte and Sally. I can only add my whole-hearted admiration and agreement. I think of you often, David, as do all who read this blog.

      If life is a performance, applause for yours is deafening.

  3. Ditto to all of the above! Peace be with you x

  4. Goodness David… what a regime… and so many people haven’t even wanted to get vaccinated against Covid-19!!


Submit a Comment

Your email address will not be published. Required fields are marked *

Other posts

Goodbye, farewell …

Goodbye, farewell …

Tim here - you'll know me as David's friend, carer and blogmaster: On 8th December 2021 at 12.20 (CET) David took his last breath and was pronounced dead by the staff at Dignitas.  It was always his...

read more
Journey’s End

Journey’s End

It’s come full circle. Read the first blog post, “A funny thing happened” of April 1 last year. Last night, 256 blog posts later, I made the same taxi trip. Yes, I’m in Zurich. Arrived last night...

read more
It’s never dull …

It’s never dull …

If you were thinking about buying the Sunday Times so that you can read the article today (see the end of yesterday’s blog), don’t. Why? Two days ago Dignity in Dying told us that Switzerland had...

read more