Powis Place

4

It’s where the ambulance drops you off. It’s a dead end. To the left is the back entrance to the National Hospital for Neurology and Neurosurgery. During this week’s three day stay, I got fresh air in Powis Place.

I was in the Neuromuscular Complex Care Centre again (June 2016 124 for PEG). I tried Noninvasive Ventilation to improve breathing and did a 24 hour cardiac study to ascertain my suitability for drugs to try and address the overheating. I tried the NIV twice each night, and became more used to it. The blood pressure and heart rate observations were fine, so I can try some drugs. My dad enjoyed speaking Norwegian with Dr Hagen, who said that the autonomic nervous system can be affected by damage to the mid-brain.

I did not take advantage of the extensive menu. On the first day, I tried fish, but it didn’t go down too well. Otherwise, I had a yoghurt and PEG feeds. I didn’t want a problem, after the effort that the MND clinic had to, arranging the appointments. I did my best to ensure that the personal care and using my equipment would go well, by preparing information about me. My dad was there all three days. The eye gaze computer was hard to use, due to the lighting and my reduced ability to focus on letters when stressed. It was exhausting, but we worked it out. Thanks nursing staff.

Communication with the doctors was highly frustrating, but the breathing consultant, Dr Crummy, gave a masterclass in closed questioning (Please, no ‘or’ questions). Good to have my dad there!

A man hobbled in, young guy. I overheard. Kids? How old? Work? Think I heard he was 28. Physio consultation. Memories, been through so much. Good luck.

Sean agreed that Savage, Flintoff and the Ping pong guy on Five Live is a great show. If you want to look at sport from the inside, check it out.

The best thing was to receive emails from Sebastian. What questions. This is one strong, brave boy. Fly that has helicopter high, far and fast. Valentina was busy working on the costumes for the musical. Great!

Back to Powis Place. In front and on the right is Great Ormond Street Children’s Hospital. The hospital’s school is behind a fence. I heard babies crying on an upper floor. An ambulance arrives and a unit is rolled out, which turns out to have a baby in it. The parents follow into the hospital. The foundation stone of this part of the National was laid in a different era – 1992, by Diana, Princess of Wales. The smokers enjoy a tab near that and the no smoking sign.

Plenty of waiting, time for reflection. Breathing machine – I know why I have it, but it gets you thinking.

Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

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