I’m going to the NHNN today to have a neurologist (with a special interest in the effects of DBS on speech) have a play around with the settings of my neurostimulator in the hope of alleviating some of my problems – slurred and indistinct speech, biting the inside of my mouth when eating, and muscular tension in my jaw. I have been waiting for three months for the hospital to get a code from Medtronic to enable the adjustment of certain parameters (not supported by default), and only found out, when the DBS speech therapist returned my call, that they haven’t even applied to Medtronic yet (I was fuming, as you can imagine). Anyway, the neurologist in question thought that it would be worthwhile having a shake-down of my settings in any case, just to see if they could improve things for me, hence the short-notice appointment.
So I leave the house just before 10am to catch the train from Gunton Station, arriving at the hospital at 1.20pm. The first person that I see is the DBS speech therapist, who performs a benchmark – assessing and recording my voice on arrival, so that it can be compared with my voice after they have adjusted my device.
A long session with the neurologist is next. We discuss my current settings, what is good and what is bad about them, and then he starts to make changes based upon my existing settings. I wish I could say that this was a scientific process but, be in no doubt, this is very much a process of trial and error. He makes an adjustment, then asks me to read out loud from a cue-card, and then asks me if I think my speech is better or worse than before. After about 45 minutes of this, I am passed back to the DBS speech therapist, and he compares my voice with the benchmark. We all agree that it is an improvement (albeit at the expense of some tremor control), and then the neurologist makes some more (trial and error) adjustments. Once the neurologist is satisfied that he had the best possible compromise between tremor and speech, I am assessed (again) by the DBS speech therapist.
I feel that some improvement has been made today, but it remains to be seen if this improvement will be sustained once the new settings have had a couple of weeks to “soak in”.
I leave the hospital with instructions to email the speech therapist in a week or two to let him know how I am getting on. In the meantime, the neurologist has promised to request the code from Medtronic so that we can try more settings in the future (if required).
As is usual, following a visit to the hospital, I grab a bite to eat in a posh London restaurant (McDonald’s) and then head off to the blues bar, where I meet up with an old friend of mine for a couple of beers and some live music to kill the time until my train back to Norfolk.