Really, Sharon? You wrote this about the National Advisory Council on Parkinson’s Research, Care, and Services meeting: "Finally, a meeting that matters to all of us." Michael Okun wrote "History was made today." Michael should know better. And your comment is offensive because you may mean that it matters to you, but you have never and will never speak for me and others. A government Advisory Council begins because it's an effective way to STOP progress. Advisory Councils are critical to halting progress. Think about it They will all sit around for many years and decide which committee they will be on in the Advisory Council (yawn). They will all sit around for about two years, telling themselves what a great thing they are doing for the poor Parkinson's patients. Trust me, Sharon, I have spent years watching how this works in Washington. It's been over 40 years ago since we were told a cure for Parkinson's was going to happen very soon. Government needs to listen to what the patients have to say rather than spending precious time waiting for the cure. I hope you all find it. Lives are in your hands now.
I am sorry if I offended you. I guess I am more optimistic about the meetings. I know there is no cure. It is a constantly moving target that is always 5 years away. But there are a lot of things that can be done to make our lives better while living with this awful disease. The fact that so many people cannot afford both their PD meds and food at the same time. Or cannot get in to see a neurologist for 2 years or more because the closest movement disorders specialist is 500 miles away. We need to make sure that everyone with pd is getting the medical care and services they need. That includes physical therapy, which Medicare imposes limits on, as well as other non traditional types of therapy. We need to be listened to. I wish there were more than 2 people with PD on the panel, but they do allow us to participate in the meetings virtually so that we can ask questions and make comments. There were a number of people with pd who spoke in the last half hour on Tuesday. I hope to be able to do that at the next meeting.
Really, Sharon? You wrote this about the National Advisory Council on Parkinson’s Research, Care, and Services meeting: "Finally, a meeting that matters to all of us." Michael Okun wrote "History was made today." Michael should know better. And your comment is offensive because you may mean that it matters to you, but you have never and will never speak for me and others. A government Advisory Council begins because it's an effective way to STOP progress. Advisory Councils are critical to halting progress. Think about it They will all sit around for many years and decide which committee they will be on in the Advisory Council (yawn). They will all sit around for about two years, telling themselves what a great thing they are doing for the poor Parkinson's patients. Trust me, Sharon, I have spent years watching how this works in Washington. It's been over 40 years ago since we were told a cure for Parkinson's was going to happen very soon. Government needs to listen to what the patients have to say rather than spending precious time waiting for the cure. I hope you all find it. Lives are in your hands now.
Susan,
I am sorry if I offended you. I guess I am more optimistic about the meetings. I know there is no cure. It is a constantly moving target that is always 5 years away. But there are a lot of things that can be done to make our lives better while living with this awful disease. The fact that so many people cannot afford both their PD meds and food at the same time. Or cannot get in to see a neurologist for 2 years or more because the closest movement disorders specialist is 500 miles away. We need to make sure that everyone with pd is getting the medical care and services they need. That includes physical therapy, which Medicare imposes limits on, as well as other non traditional types of therapy. We need to be listened to. I wish there were more than 2 people with PD on the panel, but they do allow us to participate in the meetings virtually so that we can ask questions and make comments. There were a number of people with pd who spoke in the last half hour on Tuesday. I hope to be able to do that at the next meeting.