I’m travelling to the NHNN in Queen Square, London today to see my neurologist. I’m not completely clear on the purpose of the appointment, but I believe that they like to check on the progression of your Parkinson’s Disease, and review how your DBS is performing every 12 months – it’s a little over 2 years since I had my operation, so it’s about time, really. I also want to talk to her about exenatide (a type-2 diabetes drug that was shown to halt the progression of Parkinson’s Disease in a recent clinical trial) and try to persuade her to write to my doctor, authorising him to prescribe it for me.
I take the dog over to my wife’s parent’s house while my wife disappears off to her workshop in Hevingham for a couple of hours (she has an order that is meant to be delivered on Friday, and she’s a little behind schedule with it), and then we toddle off to Gunton station to begin our train journey to London.
We arrive in plenty of time for my appointment, and are kept waiting for almost 45 minutes. I kind of expected this appointment to be a thorough evaluation of my condition – expected my DBS to be switched off to expose my PD symptoms without the benefit of stimulation, expected my neurologist to assess my balance and gait, expected a discussion of current medication, expected some sort of testing of cognitive function. Instead, I was treated to a very brief consultation (no more than 15 minutes) during which she adjusted my neurostimulator to eliminate some left sided tremor, and was about to wave me off with the promise of a further appointment in 6 months time, when I broached the subject of exenatide. Her reaction was very positive, and she was more than happy to write to my doctor to suggest prescribing it to me, so all of the worrying about her possible reaction to my request (and all of the arguments that I had prepared in my head) had been completely unnecessary. If it hadn’t been for this, I would have been extremely miffed about a round-trip of almost 8 hours for a 15 minute audience, but as it is, I’m over the moon.
I try to make an appointment for 6 months time, but the receptionist informs me that the closest appointment is in 9 months time… I smile, and we laugh and joke about it – what else can you do?
We pay a quick visit to the Blues Bar in Soho (it’d be rude not to) where we guzzle a couple of beers before heading back to Liverpool Street Station to catch our train home.