The first few years aren't bad. I was dx'ed at 39; had symptoms for several years before.Then things get tougher, the medications don't work "smoothly" and you are overwhelmed at times, with rageing dyskinesias (very uncomfortable, uncontrollable, movements) where your arms and legs take on a life of their own, flailing about and desperately wishing that it would just stop. Then there is dystonia which can happen anytime. Dystonias are like muscle cramps, many people who have experienced wry neck, and "toe locking" can relate to this, it is one of the painful things about PD.
Falling down is another thing that results in a lot of pain. After you have fallen down many times, you are covered in bruises, cuts and gashes; some people break bones, and the more you fall down, the more likely you are to get weaker and fall down more. You also get weaker from spending too much time in bed, recovering from the latest fall. You choke on dry food. You get very depressed at all you have lost; your job, your friends; in many cases your family abandon you. Sometimes you think of suicide.
One of the big problems is that you often look able bodied outwardly. If you are young, other able bodied people suspect you of malingering, and since you were healthy and able at one period of your life, you become filled with guilt and even question your own sanity. Many times a spouse will not believe that you are as sick as you say you are and marriages become split, often because of financial issues.
Finally, you are left a shell of a human being, no longer able to support yourself while facing an increased need for "extra" funds for medication and other medical needs.
And worst of all, you just keep living, and the disease just keeps progressing. Sure , you have a "good day" every once in awhile and participate in some activities, even to the point where people think that nothing is wrong with you, making things even worse for you, because they think that you can "turn on" a good day when you want to. This just leads to more guilt and shame that PD is "all in your head", and to others that it is "really nothing at all". It is the 'non-belief" of the troubles that one suffers from this horrible disease that is particularly disheartening. If people could look at advanced PD patients like a painful terminal cancer patient, they might just slightly understand what most of us are going through. cs