I was diagnosed in 1999. Started on meds 2001 (mirapexin) and on levodopa(sinemet) in 2006. Parkinson's is now starting to affect my quality of life and becomes more difficult to handle both physically and mentally. My total daily levodopa intake is substantial (1000mg), but it is still the most effective drug, my wonder pill.
From the start I have searched the web for as much sound info as I could find on reliable websites. I am a firm believer in the importance of the patient, medically trained or not, knowing all aspects of the disease they can understand. Maybe this is arrogant, but I see myself as the executive director of a team (GP, neurologist, Parkinson nurse,physio,etc,) . the final decision(s) are mainly up to me to make. I will have to live with the consequences of any decision about my medication (efficacy, side effects,etc.) This is especially important with PD, as the treatment is symptom based, there is no cure yet. and no point in taking drugs that do not address the bothersome PD symptoms You will have come across the phrase : "all Parkies are different", or similar. That is largely true and getting only 10 (TEN) minutes consultation time (this is at the hospital I go to) once in a blue moon (every 8 months or more) to assess a patient , whose speech might be badly affected as well as their mind, is stressful for both patient and consultant and will never address sufficient aspects of this complicated disease. No wonder you get the impression that treating advanced PD is a waste of time .there is very little help available, small adjustments in medication, drugs that have nasty (falls) side effects and the patient starts to feel like a guinea pig,.It is too complicated and takes too much time. It does help, though, if the patient is well prepared, questions decisions , asks the right questions , has some idea what is possible, what is not ..
I read that on the whole patients with Parkinson's disease are doing better if they attend Support Groups (probably are therefore better informed )To some extent a forum with its discussions and personal experiences do a similar job. Keeping ignorant is risky too, mistakes are sometimes made
So far I have stuck to what I believe in: Go low, go slow with the drugs. I have apart from a short try here and there (Azilect,, Entacapone) stuck to two drugs, nl. Sinemet( levodopa) and Mirapexin (a dopamine agonist) in the hope I do not end up taking drugs purely for counteracting side effects.
Best wishes for you all, I just wanted to take this off my chest!