I am sitting here at home, my wife is at her water aerobics workout and it's quiet. Jut me and Marcel the wonder dog. So, I was thinking, maybe even reflecting on my life since the diagnosis of LBD. Not how I have progressed or how life itself has been. But my frustration with both of my Neurologists. And I have determined where my frustration is. If someone has Cancer, a broken arm, fibermyalsia, their doctors treat the like they have what ever it is they were diagnosed with. The patient is told of problems to come with the treatment and told how they are progressing. The patient and the family even have resources to go to for support. Groups of people and professionals that know the disease and may have even experienced it.
With LBD, at least my experience, it has been completely different. My neurologist in Virginia doggedly attacked my earliest symptoms. She ordered tests, did research, and even consulted with colleagues in her field to make sure she was correct. She sent me for a second opinion at a research hospital that reconfirmed her diagnosis. After that flurry of medical activity, she stopped treating me like I had a disease and treated me more like an appointment she had to suffer through. The neurologist here is the same.
I get no interest from the doctor in recent changes and symptoms even if my wife brings them up. I get a blank stare for 15 minutes, a few grunt of acknowledgement, and then I sent out of the door with an appointment in three or six months. Sine my issues are inward and cannot be seen with the naked eye or even a MRI, the doctors tend to forget that I and my wife are suffering. Both neurologists know where to find sympathy, it is in the dictionary between shit and syphilis!
So, my frustration is that I am treated as though I don't exist. Either that or I am a annoyance that has to be suffered to get the insurance payment in order to pay for the new Mercedes!
Am I feeling sorry for myself? Maybe! But I think I am really tire of being invisible. The LBD Association web sight has all sorts of statistics showing that this is a disease of considerable numbers. Yet, there is no support groups, no telethon, and no Hollywood stars coming to our support. So, I have come to the conclusion that we are ALL invisible. I don't yet know what to do about this invisibility, but the next time I have some quiet time, I am going to think or reflect on it. If I remember!!