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The other night before going to bed, I sent 3 messages, in their entirety ,to my dear friend in the NL. I asked his opinion, and asked him to read the German site, since he is fluent in Dutch, German, and English, and I believe, is passable in a couple of other languages too! He is a fellow "Parkie", with whom I have been friends with for over 5 years now. The only problem we have ,is he is 7 hours ahead of me in time, and several light years ahead of me in research skills. Please read what Hein Ten Bosch has to say about housing for Parkies. >Hein ten Bosch (NL) adds to this discussion: >The question about need for Parkinson communities worldwide can be answered >with:" sure, if you look worldwide there are various activities to house >PD's in >pleasant surroundings and care giving. In Germany there is at least one, >the Schneckenhouse >and in Holland a small group of people try to start a clinic (Stichting >TULP) with >amenities for temporary lodging. > >I wonder if the people initiating the movie have seem the CD-Rom, issued to >all Parkies in the UK for free. It might help to see what is done till now >on movie or picture disk. I copied the details from EPDA Magazine's summer >edition: >CD-Rom and a self-care manual for people with Parkinson's disease >Introduction >In the UK a self care manual and a CD-Rom are being developed for people >with PD, their relatives and for professional carers. The manual and the >CD-Rom are based on a successful self-care manual that is developed in >co-operation with the Dutch Parkinson's patients Organization, and has been >used >Dutch patients and professional carers since 1993. > >Contents > >Both the manual and the version on CD-Rom give integral information on all >aspects of' living with PD - -medical information (causes, >medicine, operations etc.) >-alternative therapies >-psychosocial information (relationships, sexuality, hearing the diagnosis, >etc.) >-help with movement >-exercises >-tips on daily life >-diet >-an outline of professional help >-work >-welfare benefits >-spirituality, etc. >The information is practical, the information is state of the art and is >written in a style that is easy to understand. A large number of experts >have contributed to the contents. > >Manual and CD-Rom >The manual is a book of 225 pages, illustrated, it is meant for people who >are not familiar with the computer. The CD-Rom contains the same >information, but also video, animations, sound, music etc. Both the CD-Rom >and the manual will be for free for patients in the UK. > >Co-operation >The project is conducted by Foundation September, a non-profit organization >that specializes in international patient information projects. The project >was funded by the UK government: the NHS Executive West Midlands. Both the >PDS and the EPDA collaborated intensively. > >Future >The aim is to start a project in which the EPDA and Foundation September >will develop similar manuals and CD-Roms for other countries in close >collaboration with national patient organizations. > >More information: >Foundation September Attn. E.H. Coene, MD >Nieuwspoortkade 2A >NL-1055 RX Amsterdam, The Netherlands >tel.: ++31.20,60.60.745 >fax: ++31.20.60.60.798 >e-mail: [log in to unmask] > > >By the way: I have nothing to do with this initiative, I am just >interested. It's the first time so many millions of Dollars have been given >away to a so large a PD community!! > >Regards >Hein ten Bosch *********************************************************************************************Date: Sat, 22 Jul 2000 15:49:27 -0400 >To: "[log in to unmask]" <[log in to unmask]>, > "Marjorie L. Moorefield" <[log in to unmask]> > > >Comments: To: [log in to unmask] > > >I have been contacting several HMO's in Florida to try to > >get them to set up something as a respite center for people > >who really don't need it all the time, but would need it some > >of the time, maybe a month or two at a time. The HMO > >would pay for care for a certain length of time, instead of > >the Nursing Home alternative. > > >At 07:32 PM 07/20/2000 +1000, you wrote: > >>Here in Melbourne.Australia our group of Y.P are suffering a crisis > >>regarding our future needs regarding accommodation and care in the > >>foreseeable future.,and I am seeking comments whether this is a common > >>problem throughout the world,and what steps have been taken to solve > >>this problem. > > >Hello, > >i am gisela from germany. i also have PD since 1994, the diagnose since > >1997. > >the name of the website from the snailhaus is : > ><http://www.parkinsonweb.com>hermann terweiden has build this house with > his own hands hand and other > >helpful hands and there live 5 peoples inside who had PD. it is a >beautiful > >house and i often there and help them. our site is > ><http://www.selbsthilfetreff.net and we also have a > mailinglist ><http://www.deupark.de the owner is dietmar wessel.> > >gisela