I have recently had an appointment with my neurologist and, as expected, he told me basically that the only way to achieve a reasonable quality of life into the future is to have DBS surgery. He spoke of the risks, that not everyone is suitable etc etc. And that was it.
DBS or continue to steadily decline as the condition progresses and the side effects of levodopa even compounds the problems you are asking it to deal with!
I have seen this time coming for a while now and carried out a good deal of research. My main medication has been Sinemet for five years now and, after this comparatively ok'ish spell, I am experiencing the troubling side effects of the levodopa. Though it has helped my tremor on a daily basis, in the long term levodopa has made it very much worse and now I wake in the middle of every night shaking and needing to medicate and wait for the drugs to kick in before eventually resuming sleep. If I take more of this med at bed-time I have very broken sleep and invariably weird nightmares. The levodopa has also been the culprit for my foot dystonia-my pd was predominantly left sided but now my right middle toes are numb and 'claw-like' and my right foot turns in even when I think I'm medicated enough. Walking is then impossible until I have waited for more dopamine to rescue me.
My meds daily have been for a while: Sinemet Plus 750mg CR 200mg, Amantadine 3x100mg, Zelapar 1.25 mg. I am not allowed dopamine agonists due to horrendous side effects of dopamine agonists. I was dx about twelve years ago.
So this is the background to me starting LDN. The pd meds have enabled me to function in some way for many years but they have and now continue to lead to further disabling and troublesome symptoms..
Will LDN help? I don't know but I'll keep you posted.