[TC]

My partner has been taking Levodopa for about 15 years, which was prescribed a couple of years after diagnosis. Dyskinesias started within five years of taking it. These have been managed somewhat with amantadine but it doesn’t take too long for that drug to become less effective in counteracting the unwanted movements. If you stop taking amantadine for a few weeks, it becomes more efficacious again, but the trouble is, once you’ve been taking amantadine for some years, the effect of not taking it seems quite acute and I can guarantee you that as a carer, I can tell whether amantadine has been stopped or forgotten, because my partner is horribly rigid. So it’s hard to stop it and start it again.

I don’t mean to rain on anybody’s parade, but DBS should not be taken lightly. Please don’t assume it is necessarily the path to replacing, perhaps even partly, L-Dopa. My partner had DBS at one of the world’s leading neurosurgery hospitals a few years ago. It had never worked properly. Far from enabling my partner to cut back on a complex medication scheme, hospital consultants are now suggesting more L-dopa could be taken, despite continuing and acute on/off problems and increasing dyskinesias. OK, my partner is probably deeply unlucky, but to me, it is a little worrying to see DBS suggested as a logical step that will help fix medication problems. There is a strong possibility it will, but this is not always the case, regrettably. We have experienced this sad fact every day. DBS is an option, but success is by no means guaranteed.

I wish you well in your battle with this awful disease. Take good care of yourselves.