What Happens Next: Diagnosed with Parkinson’s Disease

If you're one who has sat in the doctor's office and heard the statement, “You have Parkinson's Disease”, eventually you will ask (whether out loud or a muffled scream), “What?!?”

Parkinson's Disease is a disease of the nervous system. At the base of the brain lies the basal ganglia. This little guy begins to degenerate in a PD patient's brain. Dopamine, a chemical found in the brain, helps control muscle movement. In a PD patient, the dopamine begins to put the brakes on production of the dopamine. An explanation, given in layman's terms of how PD affects the brain, is given by Dr. Anthony Santiago, MD, a neurologist /Movement Disorder Specialist who practices in Spokane, Washington. He stated that the brain is like the engine in a car. It needs oil to work properly and not quit. Dopamine is to the brain what oil is to an automobile engine. The neurologist is the mechanic and has the job is to find the right combination of medications (oil) to get the brain (the engine) running its best. Parkinson's Disease (PD) is different for each patient. Each person is made up differently, therefore a disease of any sort is going to interact with its benefactor in different ways. For example, the well-known Young Onset Parkinson's Disease (YOPD) patient, Michael J. Fox, acquired PD at a very young age. Another well-known PD patient, Mohammed Ali, acquired the disease later in years. PD and YOPD are differentiated by age. PD is known to affect people over the age of 50 and YOPD is usually reserved for those who are affected under the age of 50. The symptoms of PD may differ from one patient to another, so the diagnosis, which can be known to mimic Lupus, Multiple Schlerosis, Essential Tremors, and others, can often take time. The diagnosis is clinical and best done by a neurologist or a movement disorder specialist. There are many factors that are noted in the diagnosis. They include (but are not limited to) arm movement while walking, facial expression, vocal level, tremors (shaking), etc. The surprising thing about PD is the number of symptoms that are actually attributed to it. PD is known to cause depression (noted to be one of the very first signs), drooling, stiffness, achiness, loss of movement, shaking/tremors, restless leg syndrome (RLS), poor balance and coordination, etc. It's easy to see how this disease can be misdiagnosed. Once an accurate diagnosis is made (usually by a neurologist), medication(s) will most likely be prescribed along with regular, follow-up exams. Each PD doctor will begin treatment differently with his patients, depending on the severity and progression of the disease. Common brand name drugs prescribed for PD/YOPD are Mirapex, Sinemet, Stalevo, Azilect, Comtan, Requip and the list goes on. Your doctor will tailor your treatment to you specifically, depending on your symptoms/condition. The important thing to remember is that if a new drug is added and doesn't sit well with you (nausea, dizziness, etc), get in contact as soon as possible with your physician. There are so many alternatives available that it's not worth battling side affects. Find a support group. This will ward off feelings of isolation, loneliness, fear, and more. Support groups can be tremendous at doing what they are intended for – supporting you. Check with your doctor for information on a group near you, or surf to http://www.parkinson.org/ on the internet for resources. Support groups are also available online. Two excellent sites are Patients Like Me and Daily Strength. There are also many blogs (www.parkinsonsjourney.com; http://movementdisorder.dirtybutter.com/; http://mobmsa.blogspot.com/;www.mypdblog.blogspot.com) written by PD'ers that offer encouragement and support as these PD patients and/or caregivers deal with their day to day journeys with their disease and encounter (or have already encountered) similar struggles. Sharing the news with others that you have been diagnosed with PD can be hard – on them and you. For many it's a relief to finally have a name to all that's been going on in their body. They've finally be affirmed it's not all in their head (well, to a degree!). However, children will be curious why you appear to be shaking and wonder why. A good resource for little ones is a book by Kay Mixson Jenkins entitled, “Who Is PeeDee?” There are several books written on symptoms, exercise, lifestyle changes and more on this disease. A good, basic one to start reading when first diagnosed is “100 Questions and Answers About Parkinson's Disease“by Abraham Lieberman. This book is not only beneficial to the patient but for the caregiver as well. Remember… each patient is different and there may be many symptoms listed but it's possible you won't encounter them all or to the degree another patient has. One of the best ways to deal with your diagnosis is to find out about this disease, but be careful not to over stimulate your fears/concerns by checking out every internet site, book or piece of information that you can get your hands on. Reading a story of one patients' progression may look completely different than how yours may develop and you may cause yourself undue concern. Look for alternative ways of doing things if they're becoming more difficult (zippers, buttons, shoe laces). PD teaches humility – embrace it. Join a PD choral group to strengthen your vocal cords. Check out the local gym or senior center and see if there are any low impact exercise classes you can join to keep those muscles in their best condition. Walk – it's one of the best things you can do for yourself. Have a sense of humor. Laughter really is the best medicine and you're going to find much to laugh at. Take one day at a time and enjoy every moment. in every movement. Whether you've been diagnosed or not, life really should be lived like that anyhow.

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