Princeton, NJ Health Care Guide Articles

Parkinson's Disease: Mind, Mood and Behavior

Parkinson’s Disease: Mind, Mood and Behavior 

Mathew Menza, MD, UMDNJ-RWMS

Professor, Psychiatry & Neurology

Interim Chair, Department of Psychiatry

The physical aspects of Parkinson’s disease (PD), such as tremor, rigidity and postural imbalance, are the defining characteristics of the disease and they understandably receive the most attention from physicians and the press.   Nonetheless, Parkinson’s disease affects people’s lives in a much broader sense then merely by physical impairment.  For example, many of the non-motor aspects of PD, such as depression, insomnia and memory difficulties, are common and greatly affect your lives and those of your caregivers.  These non-motor aspects of PD have not been well studied though, with the encouragement of advocacy groups, some studies have begun that help to guide clinicians and patients in how to treat these problems.

  Depression, which occurs in roughly half of individuals with PD, is among the most common of the non-motor problems and causes substantial personal suffering. It is also associated with increased disability, greater cognitive decline and greater caregiver burden.  Despite the adverse consequences of depression it appears to be under-recognized and under-treated.  Depression can take many forms, but if you are feeling persistently sad, find yourself becoming socially isolated, don’t have any interest in things that used to bring you pleasure or are starting to think a lot more about things that used to bring you pleasure or are starting to think a lot more about death, talk to your doctor. 

               Sleeping difficulties are also common in individuals with PD are greatly affect quality of your life and daytime functioning.  Many different sleep problems may be seen in individuals with PD, most of which require a diagnosis by someone with expertise in this area.   Sleep problems can be thought of as difficulty with too little sleep (insomnia) or too much sleep (hypersomnia).  Within the category of too little sleep, one might have difficulty falling asleep or difficulty staying asleep (or both).  The most common problem in PD is difficulty staying asleep, referred to as sleep fragmentation.  Insomnia may be related directly to PD or to the medications used for PD.  Insomnia may also be related to other conditions, such as depression or other medical illness or to other primary sleep disorders, such as sleep apnea, restless legs or REM behavior disorder (RBD). Among the problems characterized by too much sleep are sleep attacks and excessive daytime sleepiness, both of which may be related to PD or to the medications used to treat it.

                Changes in a person’s behavior may also accompany PD. This can range from relatively minor impulsivity to major changes like hallucinations and involvement in gambling.  These changes can be extremely upsetting to patients and families but are generally treatable.  While they may often be embarrassing and difficult to discuss with your physicians, they must be addressed.  Most often, these problems are related to the medications used to treat the movement disorder and therefore require careful evaluation.  A failure to evaluate and treat these problems can lead to even more difficult situations.     

                 Memory difficulty, while generally mild for most people through most of the course of the illness, can develop and present great challenges.  Again, careful evaluation by a physician who is familiar with PD is essential as it can help to determine the cause of the memory problem and also help to guide treatment.  Many community resources are available for families if the memory problems become worse.  Discuss these options with your physician and in the support groups.

Rather than try to give you guidance on how your doctor will evaluate and treat each of these problems (this kind of information is available in a variety of publications and on the web), I would like to give you some general tips on how to approach getting help.  Also, I want to give you some general tips on what you can do to help minimize these problems and lead healthier life. 

First Steps

There are a number of important points to consider prior to visiting your doctor, regardless of what problem you are having. 

 1.            Be prepared when you go to your physician.  Write down the problems you are having and come in with as much information as you can.  For example, keep track of when the problem started, how often it is happening, etc.  Make sure you have a list of your medications and when recent changes to those medications were made.  Also, bring a list of your other doctors 2.       Bring someone with you who is familiar with your problems.  Another observer will often have a different perspective on your problem which will be helpful to your physician. 

3.   Remember that some things you experience are not related to PD.  For instance, aging, pain, most medical illnesses as well as depression and anxiety are all associated with worsening sleep, so not all sleep difficulties that happen to individuals with PD are attributable to D.  

4.  Also, pay attention to what your lifestyle is like.  For example, review stress, exercise, caffeine, etc. and have this information available when you see your doctor.

How to help yourself 

1.   There are many things you can do for yourself.  Exercising, eating well, addressing stress in your life and attending to all of your health issues can all help improve the quality of your life and improve the control of your movements.

2.   Stay involved with family and friends.  It becomes increasingly difficult to force yourself to stay involved with family and friends – resist isolation. 

3. Get involved in support groups.  The many  in-dividuals in support groups represent a wealth of common experience there are often many practical tips on how to handle common problems as well as emotional support from people who have faced similar problems.  These groups can also be very valuable for family members

4.  Get involved in advocacy groups.  Serving a cause greater than yourself can improve your sense of well being and help to improve resources for the study of the illness.  Without the advocacy groups, and many brave individuals who contribute to these groups, we would not have many of the advances that are so important to the treatment of PD.

5. Donate time and money to the search for better treatments.  

6.   Find things that you can still do and still enjoy.  Everyone needs something to look forward to, some reason to get up in the morning.

7.  Read about the illness.  The more informed you are the better you will be to manage the problems you encounter.   

       8.  Don’t be afraid to tell your family and physician about problems you are having – seek out help.  Here are some internet resources and books:

Advocacy Groups

Parkinson’s Disease Foundation (PDF) www.pdf.org

American Parkinson’s Disease Association (APDA) www.apdaparkinson.org

Michael J Fox Foundation www.michaeljfox.org

National Institute of Neurological Disorders (NINDS) www.ninds.nih.gov

Parkinson’s Action Network (PAN) www.parkinsonaction.org

Clinical Trials

www.clintrials.gov

www.PDtrials.org

Books

Psychiatric Issues in Parkinson's Disease: A Practical Guide.  Eds.  Menza, M., Marsh L.  Taylor & Francis.  2006

So, Parkinson’s disease presents many challenges for individuals and their families but you can do many things to improve how you meet these challenges. 

2008/2009 Winter NJ APDA Parkinson’s Bulletin