8 Apr, 2020

Heroes, and more ….. a tribute

These are truly difficult days for everyone as we try to outwit the virus, huddling in corners in the hope that it will slink away and burn itself out. And quite rightly we salute the multitudes of hospital and emergency workers and all the teams that support them as they tackle the awful reality of the enemy head on, often at great personal risk.  Heroes. Overall I’ve had a pretty healthy life, not needing so much in the way of medical help, but as I walked round Hyde Park yesterday – yes, alone and giving wide berth to those dangerous creatures we call humans – I realised just how much our health services have done for me over the last 9 months because of my illness; and I want to record it here. Hospitals: the consultant neurologist who broke the news with such gentle understanding last July; the clinical neurologist who came to a hospital at 8am, an hour early and unpaid, to amiably pin me down with needles and electrodes; the kind MRI and lumbar puncture people; the current neurologist and her ever-on-call specialist MND consultant nurse; the clinical psychologist who offers help (declined for now); and more.  All of those required hospital appointments of course.  And today, during virus lockdown, a hospital dietitian will be phoning to discuss nutrition matters. And then there’s the Westminster team.  Frankly I don’t really understand how it all fits together, but fit together it does. Probably generated initially by my first consultant and then spreading outwards from there, here came the troops, some visiting very regularly, all of them right up to and into my third floor flat!

  • A, the voice therapist to give advice on speech, eating, drinking, swallowing and who negotiated, through the excellent Motor Neurone Disease Association (MNDA), my free use of US and UK software to record my voice so that in future I can tap the keyboard and reproduce it.
  • C, the physiotherapist to help with energy levels, lung strength and general physical wellbeing
  • L, M and J, the occupational therapists who assessed my home for practical things, mostly for the future, resulting in: a hold bar in the shower; a shower seat (not needed yet so currently under the bed!); coded key safes in the building to allow the emergency services in, or for if I go out and forget mine; a soon-to-be-installed remote control door unlocking mechanism, again to let medics in; a soon-to-be provided wrist or pendant alarm gizmo to alert the emergency people if I start the second bottle of wine …
  • S, the Environmental Controller (sounded ominous!) to look at any other technology that might help
  • A, from a local hospice but also offering to help with legal instructions to doctors
  • C, from one of the Westminster services, who checks on my general situation by phone and called yesterday to see if I needed food delivery.
  • Even now, under lockdown, two of the above say they can visit if needed because they have the right protective equipment.

Then there’s my GP who has made a home visit, has helped with legal documents and is in regular touch, and the local pharmacist who delivers to my door. This is overwhelming. After the first diagnosis the system just kept pouring out help.  Amazing.  And it’s continuing even now during this virus crisis –  they keep phoning and emailing to make sure I’m really coping.  And of course it’s all free. I want to pay tribute to our health services and all those teams that support them. For me it’s been and still is a quite remarkable and moving experience. I was out there with you – my friends in the UK at least – on the last two Thursday evenings, clapping away.  As you can imagine I was clapping for more than their heroism against the virus.  I truly owe them.  We all do. If we do it again I’ll get the saucepans out as well.  They’re worth it!

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