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Hi, Jan is not on PIEN so here is her letter. Hope you can contribute maryse Below is my first draft of "the letter" to the various PD groups. Please send me your suggestions privately unless you feel it's something the group would learn something from. I will appreciate any and all comments - positve as well as negative! Jan Rabinowitz [log in to unmask] The current health care system in the United States is woefully inadequate for caregivers who also work full-time. Too often we are ignored or our concerns are discounted, and we have no advocate to help us. We are caught in a vicious cycle of having to work full-time in order to have health insurance and pay the many out of pocket costs associated with chronic illness, and yet at the same time, advocate for our loved ones. Those of us caring for loved ones with Parkinsons Disease face even more obstacles if and when the patients require hospitalization. Issues involving the medical community include lack of knowledge regarding medications and their effects on PD patients, the unwillingness of doctors to include the PD patient’s neurologist in any and all medical decisions, the unwillingness of doctors to communicate with each other freely regarding patient care, lack of knowledge regarding the differences between early onset PD patients and more typical PD patients, and the importance of PD medications to be administered on time. When a PD patient is hospitalized, it is left to the caregiver to inform the medical personnel involved (doctors as well as nurses) of medications contraindicated in the disease. It is left to the caregiver to try to communicate the symptoms of PD and the side effects of PD medications. It is left to the caregiver to communicate to the various doctors how various treatments interact in a PD patient. It is left to the caregiver to stress to the nursing staff the importance of administering PD medications in a timely fashion. These caregiver “duties” are difficult when the caregiver is only handling the job of caregiving. What happens when the patient is under 65 and the caregiver is working full-time at an outside job? Who is there to talk with the doctors and nurses whenever they happen to see the patient? Who is there to make sure that the medications are being given on time? Who is there to advocate for the patient while the caregiver is at work or at home caring for children and/or parents? Most of the time, the answer is no one. It would be wonderful if the various (and too many) Parkinsons Disease organizations could work together not only to create an awareness campaign for the medical community, but to formulate more comprehensive support programs for the caregivers. Other organizations seem to have much more extensive resources than the PD groups, likely because PD was historically a disease of the elderly. Yet more and more often we are seeing younger people diagnosed, and those of working age (22 to 64, primarily) are more likely to have young families and/or be a part of the sandwich generation. This group requires more support and more services. Don’t you think it’s time? ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn