Originally Posted by lurkingforacure

You are right, every PD patient is different...which means that your dad needs his family to advocate for him, as you know him best and see him and his symptoms the most. You will find many neuros/MDS pigeon-hole us into categories because it is easy (and they are less likely to be sued)....we had one doc tell us: "oh, you've had PD five years, it's about time you added Comtan to your meds" (uh, no, we are doing fine without it), you get the idea.

Know that the docs can get angry with you for learning about the disease and trying to keep up with the research....but hold firm. If you/your mom disagree with the doc, find another doc if you can. Hopefully he has a great medical team and they will work with you to help him as much as possible.

If your dad does not have his affairs in order, now is the time if he is competent. General power of attorney, power of attorney for health care, living will/DNR, will, etc. Get those documents taken care of now before you need them, because once you need them, it is very often too late to get them. Have your mom sign hers as well, it will make your dad feel less like he is being picked on (not that he is, but he is likely to see it that way) and your mom needs those in place anyway.

While you need to know as much as you can about PD, it is really more important, IMHO, to be kind, compassionate, and understanding. Remember that your dad did nothing to bring PD into his life, and would give anything to get it out. Knowing what mutations in which gene are linked to PD is all fine and good, but it will not help you when your dad is having a bad day. He needs to know you love him now just as much as you did before his diagnosis. Maybe more