Simon Morris wrote: > > What affects quality of life in PD? > A plea for assistance from the EPDA > > Quality of life is a critical issue for all associated with Parkinson's > disease (PD) - people with Parkinson's disease, their families and > caregivers, and their clinical care teams. Individuals and groups around > the world have different ideas about what factors affect quality of life in > PD. All these ideas are important, but as yet we do not fully understand > the relationships between them. Increased knowledge of the interplay of > these factors will improve understanding of PD. > > To gain this critical insight into PD, the European Parkinson's Disease > Association (EPDA) are compiling a list of factors which effect the > quality of life of Parkinson's Disease patients. > > How can you help? > > You can contribute by telling us what factors have most affected your > quality of life or that of people you know with Parkinson's disease. > (These can be factors that have either helped or harmed their quality of > life) > > Below is a list of some factors. As a start feel free to talk about them or > add others. Responses will be compiled into a world-wide study to take > place next year. > > Information on the disease > How was the diagnosis delivered? > What aspects of this did you find helpful/unhelpful? > How much information has been available to you at and since > diagnosis? > How has this helped? Was there enough? > Could your care team have provided different information I was diagnosed as as having "atypical parkinsons", it was never confirmned or a specific one of the several parkinsons plus syndromes was never given. I undestand now that perhaps a specific diagnosis cannot be made. It would have been helpful if they had explained that. > Actions you have taken > What actions have you and your family/caregiver taken that have > improved your quality of life? > Is there anything that you would not do again? > How do you and your family/caregiver perceive PD? > How have you have come to terms with PD? > Do you feel that a positive attitude to PD affects your quality of life? If so, how? > 1. The first thing i did was to join the Parkinsn list. Still the best source of information availalbe. 2. The second thing i did was to get on the mailing list of all 4 of the American National PD organizations. A good idea. 3. I was unlucky enough to get PD. I have a healthy attitude. Humor is very important to me. I am also lucky enough to have a fine caregiver, my wife. 4. We began to investigate altenative medicine since there is no therapy available through regular physicians. Some aspects of that have proved helpful. Therapies that help > Are non-drug therapies such as physiotherapy, speech therapy, > occupational therapy helpful? > What other non-drug therapies have you found helpful/unhelpful? > What drug therapies have you used that have affected (improved > or reduced) quality of life? > What about other practical factors have you found affect quality of life? There are no drug therapies avaiable for my kind of parkinsons. I have tried physical therapy and found it somewhat helful but not affecting the fundamental aspects of the disease itself. I have found most helpful my own analysis of the problems, such as balance amd walking. Interaction with the care team and support groups? > What kinds of meetings with your neurologist, primary care > physician, PD nurse etc. have been helpful/unhelpful? > What other elements of your relationship with these professionals > do you find helpful/unhelpful? > Are you a member of a PD support group or society (or similar)? > What elements of their support have you found helpful/unhelpful? > I am now operating a small support group out of my home. I am convinced that it is very important for the quality of life. Quite frankly the professionals in my experience have been a disappoitment to me. What other factors have affected/may affect your quality of life in PD? During the past several months I have had difficulty walking and now I can't walk at all without assistance. In such cases a walker or a wheelchair can be a freedom generating device. It can create a certain degree of independence. > > Thank you for taking the time to read this; please now help to improve > understanding of quality of life in PD by responding. > > We look forward to hearing from you. Please email your responses (or > questions) to Simon Morris at [log in to unmask] by > Friday 25 July. Simon is working ith the EPDA to help compile this list of > factors. Simon, -- Milo V. Anderson, Ph.D. Knowledge is free at the library; Box 417 bring your own contianer. Angwin, CA 94508 voice 707 965 2508 ODE TO A METAPHOR fax 707 965 3148 Ilustrations are useful, e-mail [log in to unmask] Or what's a meta-FOR.