If you have recently been diagnosed with Parkinson’s Disease, there are steps you need to take, short term and long term, so that you can keep your quality of life as high as possible for as long as possible.
The first thing you need to do is get a second opinion. Parkinson’s Disease is not easy to diagnose because there is no definitive test for it. The symptoms may seem obvious, but a stroke or brain tumor can possibly cause similar symptoms. The neurologist who gave you the initial diagnosis will probably recommend that you get a second opinion; the neurologist may also recommend a MRI, to rule out other possibilities. Both of those are excellent ideas.
Do your research. Learn everything you can about this chronic illness. After all, a key tenet of warfare is to know your enemy. You are going to be fighting this thing for a long time. Learn as much as you can about how Parkinson’s Disease works and how the various drugs help alleviate the symptoms. Being knowledgeable in this area will also help you respond to all your friends who give you anecdotal evidence of “friends of friends” who swear up and down that this natural remedy or that special drink has cured them of the disease. Be aware that as of this date (March 2009) there is no clinical data that fully demonstrates the existence of anything that will slow down or stop the progression of the disease.
Exercise as though your life depends on it, because it does! To be frank, your body is going to lose its speed, agility, flexibility, dexterity, and balance. Whether you have had an active lifestyle in the past or not, now is the time to become as absolutely active as possible. You need to push yourself as hard, while not endangering yourself in any way. I strongly encourage you to run, lift weights, spend thirty minutes or more each day doing stretches, and get involved in as many sports as you can. Tennis and racquetball are great sports for providing aerobic workouts; basketball and ultimate Frisbee are right up there as well.
Mental exercise is also crucial now. With the combination of the disease and any medications you will be taking, it is going to be tougher eventually to think clearly, to make decisions, and to remember things. Clinical studies have found that people with Parkinson’s Disease have a much higher risk of acquiring Alzheimer’s. Keep your brain active. Read books, add numbers in your head instead of using a calculator, memorize passages (from the Bible or great literature, for instance), and spend time writing down stories from your past.
Speech exercise will help you to keep a firm voice and to enunciate clearly. Parkinson’s patients tend to begin speaking more softly and with a raspy voice. I highly recommend the Lee Silverman Voice Treatment, a speech pathology program designed specifically for people with Parkinson’s Disease.
Examine and adjust your lifestyle. The future now looks less certain to you than it did before the diagnosis. You don’t know how long you will be able to work, and you don’t know how much you will be paying for medications in the future. If you have not kept a budget in the past, now is a good time to begin doing so. You may even want to consider talking with a financial advisor to help get your “ducks in a row.”
Examine your living conditions. Is your house a place where you can comfortably deal with Parkinson’s? Is your bedroom on the second floor? If so, will a chair lift be feasible? You may want to replace your shower nozzle with a shower hose, along with keeping a bench in the shower. Perhaps rails in the hallways and wall grips in places where you might slip (bathtub and shower) would help.
Take action to fight depression. It is now recognized that Parkinson’s patients can suffer from depression, either from the disease or from the medications. Get active within the community, especially where social interaction is possible. Whether you are an introvert or not, you will need to fight the natural Parkinson’s tendency to withdraw from those around you. Get out there, make new friends, and get involved.
You will need to sit down and do some retirement planning, if you are currently working. Get familiar with how Social Security, Disability, Medicare, and Medicaid all work. The sooner you come to grips with your options and understand basically how you can proceed down the road, the better.
Finally (and this is not as obvious as it seems), enjoy life! Think of it this way. Your body has been acting strangely, not responding like it used to. Now at least you have a handle on what’s been happening. There’s a name associated with it. If you have children or grand children, teach them about Parkinson’s so that they can learn to not be afraid of it. Find or make up some jokes about Parkinson’s. Your friends will not know what to say when you tell them what you have. Help them understand how it works.
One caveat, though, is that you have to decide when and how you are going to tell your employer. Chances are, your boss has already noticed something is awry. Your employer may be understanding, but it’s also possible that your employer will not understand. If you have any doubt, see an attorney first to understand your rights.
You don’t have to let Parkinson’s Disease define who you are. You do have the option of just sitting there and letting its icy claws envelope your body and mind; or you can choose to fight it for all your worth.
I highly recommend the latter.