Viv

So pleased there at least seems to be a light, however faint, appeared at the end of the tunnel. We have to remember that John's overall intake of dopamine enhancing meds has been significantly reduced and not replaced. In addition, the agonists take by far, in my experience,the longest to settle. It has taken me 5 weeks to start to feel better after a 50% increase and until the last days of that period I was definately more parkinsonian and was thinking "Im worse than ever !" Things are settling but oh so slowly.
So applying that to John,who is decreasing by 50%, from a higher dose,suddenly, who also has a poor tolerance to this class of drug and is now not receiving as much dopamine help.... it going to take a long time.
I suspect your Neuro has this in mind, hence he only concentrated on the night time, which you mentioned to him. Don't kick yourself about not mentioning John's daytime problems as I'm certain he would have said "lets just sort the Requip out first".
A lot of anxiety and heartache could be so easily avoided if consultants actually cared. Just think how much hurt you both would have avoided if he'd said "It's a drastic reduction in ropinirole and you may well feel worse for some time, but we need to do it and it will settle. Then when we've controlled the agonist we can introduce other meds to find a regime that is better tolerated and so achieve better symptom control without hallucinations"

My Neuro is the same Viv, "increase requip 8mg - 12mg, replace sinemet cr with stalevo, appointment 3/12" did'nt even look up,shake my hand or say goodbye....certainly no warnings, titration advice, what to expect.

The lady I mentioned before was told to 'make friends' with her hallucinations !

Just a final word re meds, Sinemet cr is often given at night and seems to be
common practice so should help.

There is a new drug class, the first in 10 yrs to be approved by the EU, called Safinamide .It is a re-uptake inhibitor so works in a completely different way but is intended as a Levodopa add on. I don't know if NICE have approved it for the UK, or if every PCT will allow it. Nor is there much info/experience yet but It may be worth mentioning next time.

Best wishes

Nigel