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Sandra Lentz wrote: > The following are concerns encountered, during the care of my > husband. > > Looking forward to your feedback. Thanks,Sandra. > > > > 1. Lack of knowledge of the disease by health care > professionals, which care for the person with Parkinson's disease in > Care facilities. Yes, I see that all too frequently. This seems to be particularly important in hospitals, nursing homes, and home health care. I have developed a seminar and a manual for dietitians as a result. I also offer to work with health professionals on the "Ask the Dietitian" forum, and I do get requests for information there -- the service is free, which probably encourages its use. The need for understanding is widespread, at least in the U.S. > 2. Unintentional abuse both by the health professionals and > families providing care due to lack of education. Yes! And it is often well-meant, in my experience. I've known a family to tell the husband/father that his constipation was his own fault, that it was because he wasn't trying hard enough. In the hospital and nursing home, a frequent problem is lack of understanding of the nature of PD medications, and the need for proper timing of meds. Nursing may interpret "off fluctuations" as stubbornness or trouble-making, because they saw the patient perfectly able to walk, turn over in bed, etc., just an hour previously. It's a very widespread concern. > 3. Inappropriate drug therapy creating deterioration due to > breakdown in physical ability. Again, yes. It's not always understood, even by some physicians, that some medications, for example Reglan, can lead to PD-like symptoms. To illustrate, a person is given Reglan, develops PD symptoms, then is diagnosed with PD and given PD medications. > 4. Lack of education provided in nutritional requirements in > Canada. I cannot speak for Canada, but in the U.S. I have been working very hard to raise awareness of PD among dietitians. > 5. Drug therapy interaction, creating hallucinations and > breakdown in body functions > > > > 6. Lack of access to personal Neurologists when needed. This, unfortunately, is often the case. I know of individuals who live in an area where they don't have access to a neurologist, let alone a movement disorders specialist; they must rely on their family doctor, who often has had limited experience with PD. > 7. Changes to medication by family physician without complete > knowledge of the disease. Consultation is not made with the > neurologists. Yes, see #6 > > 8. Emergency admissions, do not know the history of the > individual causing additional complications. I can't speak to this, I don't have any experience in emergency admissions. > 9. Unnecessary hospitalization and institutional placement. This can happen, if families and health professionals aren't knowledgeable about PD. For instance, apparent dementia can actually be due to undermedication especially if combined with malnutrition -- which is itself not uncommon in PD. > 10. Lack of being heard and involved in decision making by the > person with Parkinson's and family members. > > 11. Lack of continuity of care, falling through the cracks of the > health care system. It can happen, especially in some smaller communities and rural areas. > 12. Lack of continued support in the community for the caregiver > and family. Where PD support groups are strong, this may not be the case. But many areas don't have a strong PD voice. Best, Kathrynne -- Kathrynne Holden, MS, RD "Ask the Parkinson Dietitian" http://www.parkinson.org/ "Eat well, stay well with Parkinson's disease" "Parkinson's disease: Guidelines for Medical Nutrition Therapy" http://www.nutritionucanlivewith.com/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn