PD DOES eventually RUIN MANY of OUR lives. Maybe not today, not tomorrow, but one day it just does. Maybe i should just keep my mouth shut, but hey, some day even Harry Potter is going to die too, right?
By ruin i mean many things. Bodily ruin, financial ruin, relationship ruin, etc. In the beginning, we muster courage, we believe that it's not so bad that we can somehow mold it to fit our expectations, our NEEDS. But then, as it advances, bad things come about, things like not being able to get out of bed, depression, weakness, falling, dyskinesia, pain, psychological changes. And the worst part of it is that if we seem to get a bit self engrossed, as one might expect anyone with such severe problems to get, we can change the way that we relate to others.
WE wonder why we lose our friends. They are usually the first to go. It takes a special friend to be able to listen to us tell them about our condition over and over again, without getting a bit sick of it themselves. It
brings them down, they don't enjoy our conversation anymore and then get scarce. Then the people who love us go. This is for many reasons, they can't take our disease because it affects them in such a negative way too. Many a spouse of a PWP will tell you that they "just can't take it anymore". Since we don't just pass on in a "reasonable" time, it gets all engrossing for our "caretakers" too.
NOw my best advice to those who haven't yet been abandoned, is to just "shut up" about PD. If you are unfortunate enough to be living with someone who just can't take PD, their behavior will cahnge too. IN some cases they will make a big deal out of your changing demeanor, and bait you so taht you start saying things that are "nasty" back to them. This then gives them the "out" that they are looking for. Arguements increase, and eventually they say that they "can't handle you" anymore.
What i have related is like the ghost of christmas future, for many of you, these things have not yet come to pass. THose able to still post here must remember this. We make our own future. So even if you were witty and outgoing and a good conversationalist, or whatever it was that attracted you to your partner and caretaker, PD MAY change all that and you MAY be eventually despised for the changes that PD brings, and therefore "abandoned" or at the very least "marginalized" in and amongst your friends and family. It takes a very intelligent person to notice the subtle changes that PD bestows on us. If one were told you that they thought that you were in the beginning of dementia, How would you react? If you thought that nothing had changed and that you were still the same person inside, would you neccessarily be correct?
So , I will leave this with each one one of you to ponder. I have no answers for the questions that I pose, except for that piece of advice. Don't fight with anybody, just because you are in pain or feeling crappy because of one or another of the worst PD symptoms. TRy to be upbeat and optimistic, NOBODY wants to hear your sorrows. TRy this and you MIGHT be able to hold on to your life as you know it for a few more years than otherwise. If you don't take my words to heart, then i can say that what i have said is a possible scenario for your future. Please, my PD friends, choose better over worse. cs