Although this issue is primarily about Parkinson’s disease (PD) many of the aspects of caring for Parkinson’s patients cross the boundaries of caring for those with other brain diseases and injuries.  Not only do the disorders bring forth a jumble of physical, emotional and intellectual turmoil in those with the condition; they can produce the same kinds of reactions in their caregivers.  Parkinson’s disease tends to be rather gradual in its progression and sometimes both the affected individual and the caregiver(s) have had time to adapt to the demands that inevitably result.   The primary ingredient required in PD is patience.  Because of slowed movement, muscular rigidity, slowed speech and feeding problems things slow down by a magnitude of about ten.  Typically until late in the disease, individuals retain their intellectual capacity so are well aware of what is taking place in their environment.  Their ability to respond to it, however, is impaired so that caregivers often assume that they haven’t been heard or understood.  Especially in institutional settings where everything is supposed to run on a schedule, time is a commodity in short supply.  Parkinson’s patients may get less time than they need to eat, respond to questions and requests, bathe, toilet and ambulate.  For most caregivers, fatigue, social isolation and loneliness are constant companions.  In addition, financial strain can be a major stressor in families with serious, chronic illness.  We have no organized approach in our current health care system that promotes integrated solutions or case management for patients and families who find themselves with an illness that can bring on debility, loss of social status, loss of income and increased care needs.   Those with commercial insurance or Medicare can sometimes meet criteria for Home Health but it is intermittent and of short duration until a specific problem is dealt with.  At times a stay in a Skilled Nursing Facility may be indicated after hospitalization.  Chore services and companion care is available but are on a private pay basis.  Usually, however, outside services are only used for episodes of acute illness with the caregivers being left to deal with day in - day out, year in – year out duty.  Some type of social support network is crucial for the caregiver(s) to stay healthy and vigorous enough to carry out their responsibilities, whether that is family, friends or paid caregivers.  Below is a list of some of the organizations and groups that can provide information, referral and assistance to individuals with Parkinson’s Disease and their caregivers.  Some additional sites are listed at www.askdrroot.com/the_pathway_of_parkinson’s_disease.

http://www.apdaparkinson.org/ - the American Parkinson’s Disease Association has local chapters across the country that can assist patients and their families in finding out what is available in their city or state.  They also produce and distribute educational materials and support research.

http://www.pdcaregiver.org/ - a collection of notes by Jeffrey Jones that include comments and questions from caregivers, links to related websites and organizations, etc. All resources listed on the site pertain to those who care for Parkinson’s patients.  Topics range from poetry to caregiver health to gait problems to stress relievers.

http://www.myparkinsons.org/ - a website specifically for caregivers of Parkinson’s that offers related books, advice for personal care of patients, an extensive list with descriptions of various websites and organizations that serve Parkinson’s patients.

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=577 – The Family Caregiver Association offers widespread advice on caregiving for many types of conditions, including Parkinson’s

http://www.parkinson.org/Page.aspx?pid=269 – National Parkinson’s Foundation offers caregiver resources, volunteer opportunities, has links to clinical trials, and describes the Brain Endowment Bank for which people can donate brain tissue for research.  It has an extensive list of caregiver websites and organizations.