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Mid-Stage Parkinson's: Taking Charge

By Paula McFeely Wiener, M.S.W., L.C.S.W.

In this last installment of our series on mid-stage Parkinson’s disease (PD), we offer suggestions that may help you to take charge of your PD.  While not all of these ideas will work well with your lifestyle and unique experiences, by utilizing some of these, along with the tips mentioned in the previous three articles in this series — for managing your symptoms and side effects, and for building a health care team — you may find it easier to take charge of your PD.

Education plays a vital role in living well with any chronic disease.  Several PD organizations offer educational resources, covering issues such as medication management, nonmotor symptoms and coping strategies.  For instance, PDF offers free publications and presents several online seminars a year.  And support groups — in addition to their role as places for sharing experiences — can be a source for valuable regular educational programs. 

In addition, it may be helpful to keep in your home a general PD treatment book, written by a movement disorder specialist.  It may save you a call or visit to your neurologist.

Lastly, consider investigating if there is a Chronic Disease Self Management Program in your area.  The prototype was developed at Stanford University and it is now offered throughout the US for people with a variety of chronic diseases.  It involves six weekly sessions during which trained leaders cover topics such as appropriate use of medications and tips for communicating with family, friends and health professionals.

Recent animal models have shown that exercise may be neuroprotective and neurorestorative (meaning it may actually slow down or reverse the progression of PD).  We do not yet know whether that holds true for humans, but we do know that exercise improves and maintains mobility, flexibility, range of motion and balance — that is, all of the faculties that are necessary to maintain independence.  Exercise can also reduce depression and constipation.

Exercise can take many forms.  Whether it’s brisk walking, using instructional videos, attending classes, hiring a fitness trainer or working with a physical therapist — choose those exercises that are fun for you and that you are willing to do regularly.

Self Care
Because managing PD becomes more important as the disease progresses, some people may neglect the basics of health maintenance.  Don’t overlook physical exams and tests such as mammograms and colonoscopies.  Eat a healthy varied diet that includes high-fiber foods to reduce constipation, drink plenty of fluids and maintain a healthy weight — additional pounds can worsen mobility problems.  Aim to get seven to eight hours of continuous sleep at night to assure you are well rested.  On days when you feel good, try to pace yourself, so as not to lose stamina. 

Some people find relief in alternative treatments, such as mindful meditation and/or relaxation exercises, although there is no clinical proof of their effectiveness for PD.  The reported benefits of these activities include reduction of tremors, pain and anxiety.  Also, acupuncture is reported to help with tremors and rigidity, while massages may ease muscle stiffness and aching.  Unless massage therapy is done by a physical therapist, it is usually not covered by insurance or Medicare.  

Legal Planning and Advice
During mid-stage PD, you may think about leaving your job, applying for social security disability, or making plans for your and your family’s future.  In doing so, you may need legal advice.  There are resources available to help you educate yourself on employment accommodation, care plans, advanced directives and wills.  In upcoming issues of this newsletter, you will find a series devoted to legal issues.

Coping and Finding Support
Adjusting to life with a chronic disease is a challenge for anyone.  Each person will find his or her own way of coping.  One strategy is socializing, which research indicates is vital to maintaining good health and cognitive functioning.  While some people find it helpful to join a support group, others prefer to pursue hobbies such as exercise, art or photography.  Still others may find fulfillment in activities designed to advance the Parkinson’s cause.  Lastly, some research shows that a person with PD who has a positive attitude has a better perceived quality of life than those with more negative attitudes, even if his or her symptoms are worse. 

We hope this article and the previous three in the series have helped you to meet the challenges of mid-stage Parkinson’s.  If you have additional questions about mid-stage PD, call PDF’s helpline at (800) 457-6676.

Ms. Weiner is Community Out­reach Manager at PDF.

To find the resources mentioned in the article, search PDF's online Parkinson's Disease Resource List.