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Friday, August 15, 2014

In the Spotlight: Parkinson's Disease

6:25 AM Posted by Tiffany Taft , ,
When I looked at our Rare Disease of the Month schedule this morning to see what the topic was for this August, I did a double take when I saw it's Parkinson's Disease - considering the recent death of Robin Williams and his wife telling the media he was in the disease's early stages.  Robin also came up a few months ago in our post on Scleroderma, which he also lived with.  It'd be pure speculation to discuss the role of either of these conditions in his decision to end his life.  So instead, let's learn a little about the disease.

Snapshot:  Parkinson's Disease (PD) is a progressive condition that affects the brain by depleting a chemical called dopamine, which in turn leads to problems with bodily movements and cognitive function.  Typically it starts out as a simple tremor in a person's hand, then progresses to trouble controlling limbs, stiffness, and slowing of movements (bradykinesia).  The cause of PD isn't known, but genetics and environmental triggers are thought to play a role.  Medical treatments are available to slow down the disease's progression, but there is no cure.  PD has gained attention in the past decade or so with Michael J. Fox and Muhammad Ali coming forward with their personal struggles with the disease.

How Common is It?
According to the Parkinson's Disease Foundation, PD affects around 1 million people in the United States, with about 60,000 people diagnosed per year, and more than 4 million people worldwide.  All races are affected, but PD appears more often in Caucasians.  Men are also slightly more likely to get PD than women.  Typically PD appears around age 60, but can happen at any time.  PD occurring under the age of 30 years is incredibly rare.  Over the age of 80, rates of PD rise to about 1 in 20 people.

What About Diagnosis and Treatment?
There is no one specific test for PD; rather physicians make the diagnosis based on medical history, symptoms, and physical and neurological evaluations. Often times a doctor will give an anti-Parkinson's medication to test the diagnosis - if the person improves, then PD is confirmed.

Medications that increase dopamine levels in the brain are the first line treatment for PD.  The most effective of these is Carbidopa-Levodopa.  Unfortunately, in some people Levodopa's effects wear off over long term use.  Other medications include drugs that mimic dopamine in the brain (dopamine agonists), and while these may not work as well as Levodopa their effects last longer and can help when Levodopa begins to wear off.  Other drugs include MAO-B inhibitors, COMT inhibitors, anticholinergics, and Amantadine.  Finding the proper dose of medications that affect dopamine is critical as too much of the chemical in the brain can lead to symptoms similar to those seen in schizophrenia.

Non-drug treatments include the implantation of a stimulation device deep in the brain (i.e. deep brain stimulation).  This is typically used after medications no longer work to control PD symptoms as the surgery comes with significant risks and some side effects, however it is considered safe for most people.  The effects can be quite remarkable:

What About the Social and Emotional Impact?
As you can imagine, the social and emotional impacts of PD can be substantial especially as the disease progresses to more severe stages.  Also, PD affects chemicals in the brain that are implicated in anxiety and depression, making it even more challenging to cope with the disease. Rates of depression for people living with PD are about 1 in 3, while around 15% have significant anxiety and 30% develop panic attacks.  20% of people with PD have both anxiety and depression.  Research studies have shown that depression and anxiety vary at different points of the disease, which is similar to many other chronic illnesses. For example, at the very beginning, diagnosis and the process of coming to terms with the fact of having a progressive and disabling illness may be sufficient to cause depression. Later on, progressive deterioration and increasing dependency on others may once again bring on feelings of depression or anxiety. At any stage, a rapid deterioration in functioning or the development or worsening of treatment complications may cause fresh concerns and require a new period of adjustment.

Sexual dysfunction is a common issue for people living with PD.  Social withdrawal due to shame about uncontrolled movements or speech problems, fatigue, mobility challenges, and loss of autonomy is also common.  People with PD may feel like a burden on their loved ones and decide it's better to not try to do activities they once enjoyed because of the help they require.

The Michael J. Fox Foundation offers some good advice for dealing with the emotional impacts of life with PD.  Because depression and anxiety predict poorer health outcomes, it's important to do things to minimize them.

Helpful Resources

The Michael J. Fox Foundation

National Parkinson Foundation

American Parkinson Disease Foundation

Parkinson's Action Network