A recurring theme in these blogs is the amazing support and helpfulness of other people, and on that subject it’s time I gave a special mention to NHS staff. That includes those in both Neurology and Physiotherapy at the Princess Royal Hospital, clinical trial staff at the Royal Sussex Hospital, and the MND nurse who regularly visits me at home. They have all been brilliant, although I did have some reservations at my first physio appointment when I had to roll up my trouser legs and strut up and down, feeling a bit like a character from Monty Python.
Sadly, I can’t be so positive about West Sussex County Council. Armed with an NHS letter of support, I applied to them for a ‘Blue Badge’. WSCC’s website said it could take ‘up to’ 8 weeks, but I’d been warned that it could take longer, so I allowed 10 weeks before starting to chase. Their website appeared helpful, having a facility to ‘track my application’. Unfortunately, 10 weeks after applying, all it could tell me was that my application ‘had been received by WSCC on 21 April’!
An email enquiry did prompt a fairly rapid reply (2 days), apologising for the delay, and two weeks later, good news! My badge was now ready and would be sent to Haywards Heath Library for collection, but I must allow another week for it to get there (well, it is a long way from Bognor Regis).
Finally, 13 weeks after applying, I collected my Blue Badge, took it home, and opened the package. All seemed in order. There were my correct name and personal details; but who was this man staring at me from the photograph? It wasn’t me! They had used someone else’s photograph on my badge!!! WSCC were again apologetic. A new badge would be issued (without charge!), and they’d deliver it direct to my home. Another two weeks have passed and I’m still waiting.
A major milestone in the clinical trials was reached on 31 July. After 3 months on the standard MND medication, it was time for me to start on the new drug (or, of course, a placebo). A full day at the Royal Sussex Hospital, and a thorough medical examination, saw them fill a further 14 test tubes with blood (I now have two empty arms!), before another lumbar puncture.
The neurologist I’ve been seeing has moved on (was it something I said?), so I was seen, instead, by the head of department, Professor Leigh. A highly experienced individual, and very chatty (we discovered a mutual interest in salmon fishing), but despite his experience with lumbar punctures, it was his 3rd or 4th attempt before he succeeded in withdrawing a sample of spinal fluid. Perhaps I should have warned him that, being a Scot, I don’t give away anything easily!
Having established that I was fit and well enough (and willing) to continue, they then gave me the new drug. Two hours later, I’d had no adverse reaction, so after 6½ hours in the hospital, I was allowed to go home. So far, I have noticed no effect, good or bad. Yesterday, a week later, I had another follow-up appointment at Brighton to check my vital signs (all ok – still alive!) and to take more blood, but only nine test tubes. I’m not sure what part of my anatomy they’ve emptied this time. I daren’t look!
Physically, the effects of my MND progress slowly but surely. I’m still walking, but less steadily, and my hands seem to be getting worse. The good news is that my lung capacity is an impressive 120% of expected. I can’t play golf but I could be a star at blow football!!