The public, doctors, and people with Parkinson's. Who knows what about PD?
More than a million Americans have Parkinson’s, 60,000 additional cases are diagnosed every year, and more than 10 million people have it world wide. Thousands more have the disease but go undetected and yet the public doesn’t have a clue as to what Parkinson’s is or what it means to have it. Some of the things well meaning people told me when I was first diagnosed are that I would have to stop working, that I should prepare my will while I was still able, that I should start looking for assisted living now, and that I will probably be dead in X number years. Lack of knowledge pervades. Take the Parkinson’s IQ test.What is Parkinson’s? Is PD genetic? Is PD curable? Name 4 major PD symptoms. Does Sinemet lose its effectiveness over time? Do all PWP have tremors? Does PD kill you?
Doctors, of course, know about PD but are not the best at treating it. They know the disease effects each of us differently but treat it generally not individually. Medication is the name of their game. Azilect or Mirapex to start if the PD is mild and then increasing doses of Sinemet (Madopar in the EU) as it progresses. They may also prescribe meds for depression, anxiety, dizziness, and low blood pressure. You could wind up taking pills by the fist full. Few doctors though prescribe a comprehensive treatment plan that includes physical exercise and mental well being or the value of social engagement or joining a PD support group. To be fair there is not much more they can do than manage symptoms.
PWP are fully aware of the disease. Really aware. The disease doesn’t let you forget. Most PWP have educated themselves to have a good understanding of the disease so they can make a self treatment plan to best care for themselves. They share their knowledge and experience and provide each other with information doctors don’t tell us. We are our own best resource.
Current research indicates that depression may be the first sign of Parkinson’s beginning before motor symptoms appear and that it may even be part of the underlying disease process. Statistics show that 40% of PD patients suffer from depression but no neurologist has asked me in more than a general way how I am doing emotionally. All concern has been with the physical aspects of the disease. And at first I thought of Parkinson’s as a physical disease, a movement disorder. I now know it is mental. It is a battle with PD for the control of my mind and emotions. A healthy mind is the greatest asset in fighting the disease. It helps me to accept the reality of what is, neither making more of the disease or less. I accept that I am going to probably lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and how I feel. PD slowly and continuously wears you down. There is a heavy emotional cost to having a physically and mentally punishing neurological brain disorder that progressively gets worse and is not curable so I keep telling myself that I have the disease, I am not the disease. I have it, it doesn’t have me. Some of the time I actually believe it.
Current research indicates that depression may be the first sign of Parkinson’s beginning before motor symptoms appear and that it may even be part of the underlying disease process. Statistics show that 40% of PD patients suffer from depression but no neurologist has asked me in more than a general way how I am doing emotionally. All concern has been with the physical aspects of the disease. And at first I thought of Parkinson’s as a physical disease, a movement disorder. I now know it is mental. It is a battle with PD for the control of my mind and emotions. A healthy mind is the greatest asset in fighting the disease. It helps me to accept the reality of what is, neither making more of the disease or less. I accept that I am going to probably lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and how I feel. PD slowly and continuously wears you down. There is a heavy emotional cost to having a physically and mentally punishing neurological brain disorder that progressively gets worse and is not curable so I keep telling myself that I have the disease, I am not the disease. I have it, it doesn’t have me. Some of the time I actually believe it.