I’ve seen three different neurologists so far. All have been pretty much the same. How are your meds doing, take three of these a day and see me again in a year. I wasn’t much better as I didn’t prepare for visits, wasn’t always fully truthful with them, often tried to appear better than I was, didn’t ask the hard questions and didn’t even remember their names. It was as if we had a tacit agreement to spend a pleasant half hour together. We could have served tea. I realized that this was not helping me fight Parkinson’s and decided to make my next appointment more meaningful.
I didn’t wait for the yearly visit but was proactive and called three months early. I want to make an appointment to see my neurologist. Why she asked? I need his help fighting Parkinson’s. I can fit you in in six weeks. Six weeks, don’t you have anything sooner. This is serious. I’m loosing the battle with PD and need help. Sir, if you have a medical emergency we suggest you call 911 or go to the nearest Emergency Department. Hmmm, let me think about this. Is PD a medical emergency?
A little setback but six weeks later, still determined to be the poster boy in the fight against PD, I see the neurologist. How are you he asked? Not good, I have Parkinson’s and want to know how to stop the progression of the disease and be cured. Concerned look, there isn’t a cure. I’m serious I said. I need a comprehensive treatment plan based on todays best medical knowledge to help stop the progression. There is no proven way to slow or stop the progression of PD. What about exercise? I thought exercise helped. Exercise is good because it can lessen the effect the disease has on you but it will not help protect the dopamine producing neurons in the substantia nigra. I thought new research shows that exercise can help develop new nerve cells in the brain. Yes, that is true but in a different part of the brain that can mostly benefit some stroke patients. There is no evidence of dopamine producing cells regenerating or of new ones developing. Diet, exercise and a good life style can help you stay healthy, active, and mobile. They can lessen the effect PD has on you but nothing has been proven to slow or stop the progression of the disease. Coenzyme Q10, for example, was thought to help but clinical trials have been stopped because it doesn’t. Scientists are researching a number of things like stem cell therapy and alpha synuclein busting drugs. We have hope for the future but there isn’t anything now except deep brain stimulation and medications. The best way to control PD is to stay healthy and take the right medication in the right dose at the right time and let me know of any changes so we can make adjustments and prescribe correctly for you.
Okay, I have a progressive incurable disease called Parkinson’s. PD has a mind of its own and will develop at its own speed and in its own way. So, what to make of this and what to do? Be me, not the disease. Do not let Parkinson’s control or dominate my life or become my identity. I have the disease, I am not the disease. Take a step back from it. Don’t be alone with it. Enjoy time with family and friends. Do what I can to be healthy. Enjoy the good days as much as possible. Admit and accept the reality of what is. Accept that it is going to get worse and prepare for the future which I admit I am having hard time thinking about. Try to maintain a positive mental outlook. Depression, get thee behind me. Brave words, easy to say, harder to do when PD affects every move I make and I know that somewhere down the road a hard rains going to fall. I’ll let you know how it works out.
