I'm on my own living back in my home, Canada, and in stage 4, early stage 4. My own family still live in the states. Iwill soon be amicably divorced, and my children now see why i moved on, to spare them the sadness of living with a slowly, ever slowly dying man who gets a teeny bit worse every day. My family is having a much "clearer" time now that i'm out of sight, out of mind, except when they want money (sounds so much like "real life", doesn't it?. Seriously, it is so much better being on ones own, so that ones loved one's can laugh and joke with you on the other side of a telephone line while you are writhing with dyskinesia, or unable to get out of your chair. What they don't see they don't have to cope with emotionally. A few good fake laughs from me and we hang up with them "thinking that dad's OK, and although a lot of you dissagree with this way of coping with PD, hell, it works for us.
All is not fine with me as you guys can imagine, looking at yourselves with all your own tortures that PD has served to you. Yes, dyskinesia is a like two snakes mating, but i just keep as drugged as i can. I am in my own apt, with futons for furniture (with those memory foam pads on top of them, so if i'm a goin' down, i can just about festinate to at least one of them before my fall is broken.
At least i have a lifetime pension to pay for the meds and a roof over my head, (Allah be praised!!!!!!!), but i see in my mind all the problems that you out there who are not so fortunate, could overcome your abilities to cope. Coping with late stage PD is really a whole different ball game than the early stages present. Loss of a good deal of "executive function has made it difficult to do things that this guy never had to do in a long while. I licked, and stamped my first "rent envelope" in 22 years awhile ago, and electrical bill, phone'' cable, and other things which YOU either do, or go into an institution. Shopping is a chore, cause "cinderella" never quite makes sure that i am not tardy when cocktail time rolls around. That's when i go into "scary deep freeze", which thus forces one eventually to develop a reasonable "medication regimen" to "set themselves straight", with, sadly, the only things we really have; drugs. I have to spend one out of three days mostly in bed, even with the 30mg of Dexedrine/day that my neuro prescribed for me, some days i just cant get up and washed and dressed and out. Some days, I can take 30 mg of amphetamine and still sleep, and with a mild sleeping pill, i can break the PD "messed up circadian rhythm" and for a few days can live life in step to the waking, working hours of doctors. I've been on heavy drugs for 6 years now (as with pain meds), and i wanted to say a bit about controlled drugs as they are indicated in a "Parkinsonians drug regimen).
Drug therapy is a double edged sword. You will "pay for it" in the end; yet you will pay almost the same in the end anyway, only you'll "show" that you are undermedicated, and beleive me much more miserable for it! If one takes narcotics for a long time, one is "dependent" on them, as with antispasmodics, L-Dopa, benzodiazepines and/ or SSNRI's; or any combo that "floats yer boat". In our condition it doesn't matter anymore, we haven't got 20 more years of life (if one can call it life), so no guilt feelings about it. As long as you raise your dose slowly, ever so slowly, and are willing to take some hard pain before another minmal dose to see one through, IMHO, you shouldn't worry about it too much. I mean ,i got this far with minimal depression even though my life fell totally apart, in part due to enlightened neurologists who are not unlike "the bartender". Well the reason i bucked outa here years ago is because typing became painful for me, so see yuz round. cs