Newly Diagnosed with Parkinson's

If You Are Newly Diagnosed

You are not alone. It is believed that over 1.5 million people in the United States have Parkinson’s disease (PD). Parkinson’s is primarily thought of as a movement disorder, with the most commonly associated symptoms being tremor, stiffness, slowness, and changes in balance and gait (walking). At the same time, PD may cause many other symptoms that are not related to movement, so-called non-motor symptoms. The diagnosis of PD is determined by physician, usually a neurologist, based on a careful review of your symptoms and a detailed physical examination. There is no definitive test for PD, though a neuroimaging test called a DaT scan may be helpful in ruling out some diagnoses that may appear similar to Parkinson’s disease, such as essential tremor. In most cases, however, the diagnosis can be made without additional testing. Your doctor will track changes in your physical examination as well as in your symptoms as time passes and as you try medications. The diagnosis is continually re-evaluated to make sure there are no alternative diagnoses that are more likely or need to be ruled out. Many medications are available for the treatment of symptoms of PD. Research continues worldwide to seek out new treatments and, we hope one day, a possible cure.

What’s Happening in the Brain?

It is not known what exactly causes Parkinson’s disease. There is even debate among scientists about whether PD is one single disorder or actually a collection of disorders that share many characteristics. We do know that genetic factors and environmental exposures play a role. However, most of the time, it is not possible to determine why any one individual develops PD.The primary effects of Parkinson’s disease are on an area deep in the brain called the substantia nigra, where brain cells (known as neurons) produce a neurotransmitter called dopamine and release it in another region of the brain called the basal ganglia. Normal release of dopamine sends signals resulting in smooth, coordinated muscle movements. In PD, these dopamine-producing neurons begin to die. By the time classic motor symptoms of PD are present, it is estimated that 50-70% of those neurons have been lost. This means the changes in the brain caused by PD are occurring for many years before the symptoms are recognized and a diagnosis can be made. Much of PD research today is aimed at detecting the changes of PD earlier than is possible now, so that future treatments may be targeted at the disease even before symptoms become apparent. For now, however, treatment is based on symptom management, very often by supplementing the brain’s dopamine signal.

What Should I Expect?

Parkinson’s disease is a progressive disorder. Fortunately, in most cases the progression develops slowly over many years and there are treatments that can be used to manage the symptoms that are present at any stage. There are many common themes in how it progresses over time, but the changes any one individual experiences are unique to that individual. Very commonly, symptoms are first present on one side of the body and later spread to include the other side. Treatments that may be quite effective in early stages of PD may become more of a challenge over time, requiring an increasing amount of medication to try to maintain the same level of benefit. There is a formal staging system for PD, known as the Hoehn & Yahr scale. However, it was designed primarily to categorize patients for inclusion in research studies. It doesn’t really capture the experience of an individual patient because it does not include, for example, how well they respond to medications or how much they may be affected by non-motor symptoms. Therefore, its usefulness to individuals is very limited.

Parkinson’s Disease Symptoms

While the motor symptoms of Parkinson’s disease are more well-known, it is very important to be aware of the non-motor symptoms that are also part of the disorder. Many non-motor symptoms, in hindsight, may develop before the motor symptoms are present, and are only recognized as being part of PD months or years later. In many cases, the non-motor symptoms may be as troublesome or more troublesome than the motor symptoms. It is important to note that not all symptoms are present in all cases of PD. For example, many individuals with Parkinson’s disease never experience a tremor.

Motor Symptoms

Predominantly due to the loss of dopamine, these symptoms affect the ability to move with fluid, rapid control as well as balance and posture:[/vc_column_text][mk_table style="style2"]SymptomMedical Information & Other InformationShaking/TremorResting tremor – one that occurs when the body is at restStiffnessRigidity or "cogwheel" rigidity – resistance to passive motionSlownessBradykinesiaChanges in walkingShuffling, stooped posture, gait freezing (trouble getting feet started)ImbalancePostural instability – difficulty recovering from loss of balanceSmall handwritingPostural instability – difficulty recovering from loss of balanceVoice changesHypophonia – soft voice; may also be hoarse/gravellyLess facial expressionMasked facies or hypomimia – face doesn’t show range of emotionExtra movementsDyskinesias – uncontrolled body movements[/mk_table][vc_column_text]

Non-Motor Symptoms

Other symptoms may arise from effect of Parkinson’s disease on systems other than dopamine, including serotonin, norepinephrine and the automatic autonomic nervous system that controls body functions beyond our conscious control, like sweating or bowel function. These symptoms may be present in individuals without Parkinson’s disease, and as mentioned previously, in individuals with PD, they may appear years before the motor symptoms emerge:[/vc_column_text][mk_table style="style2"]SymptomMedical Information & Other InformationDepressionMay be present before motor symptoms in 40% or more of cases of PDAnxietyVery common, may be alleviated with dopamine treatmentsConstipationVery common and sometimes quite severeBlood pressure changeOrthostatic hypotension – BP drops standing up; may also be too highFeeling too hot or coldDifficulty regulating temperature, often sweating too muchFlaky skin rashSeborrheic dermatitis – aka “dandruff,” at hairline, eyebrows, cheeksDifficulty multitaskingEasily distractible from a taskFatigueSleep difficultiesInsomnia – can get out of sleep rhythm or have trouble staying asleepActing out dreamsREM sleep behavior disorderWeight lossMetabolic changes and loss of muscle mass over timeLoss of sense of smellAnosmia -- may also affect sense of taste, which depends on smell[/mk_table][vc_column_text]

Treatments & Support

Once you are diagnosed, it is important to think of management of your Parkinson’s disease as a team effort. Key players obviously include you and your doctor -- we recommend you establish a relationship with a neurologist that you trust as a knowledgeable guide along your journey. Ideally, your doctor will be a Movement Disorders specialist, one who has received additional specialized fellowship training in the treatment of PD and related disorders. There are many medications used to treat symptoms of PD, with more arriving every year. In some cases, it may be appropriate to consider treatments that go beyond medications, such as deep brain stimulation, which is surgery to place a pacemaker-like device into the brain. Your team will also include friends and family that assist you or provide care along the way. It may also include many other individuals, who may include physical therapists, occupational therapists, speech and language pathologists, personal trainers, counselors, and possibly physicians that specialize in areas outside of neurology, such as gastroenterologists, psychiatrists, and so forth. Finally, your team will include your community – people around you with PD, their caregivers, and other supportive individuals. The Parkinson’s Community Los Angeles is here to help provide you with education and resources to help you build your team and become proactive in the management of your own symptoms. You will not be alone.[/vc_column_text][/vc_column][/vc_row]