Apologies I seem to have posted before finishing my reply.
Like you I am now really suffering a reduction in quality of life. This last year has seen a particular decline along with a rise in anxiety. I spent Christmas worrying what plans I should put in place for if/when things get too bad to work and care for myself. Not a pleasant thought I know but whereas there is information about progression with medication i.e. Different meds and strengths, combining meds and when they are no longer viable things like DBS etc. There appears no real advice on how to manage symptoms when not on meds, how things will progress etc. I fear I will become so rigid and immobile I may be locked in my own body. Another even worse thought.
On a positive note I hear, unofficially, that a Dutch neurologist is trying to start a study of alternative therapies including those few people around the world who claim to have reversed symptoms using diet, amino acid therapy, fast walking, biking, Qigong etc. Let’s hope they find something that all of us PD sufferers can use to reverse our symptoms.
Wishing you all the best for your continued journey