PD: Future Housing needs for Young Parkies

["Marjorie L. Moorefield" <minx32@xxxxxxxxxxx>]

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: septembe@xxxxxxxxxxxxxx
>
>
> 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: "robes@xxxxxxxxxxxxxxxx" <robes@xxxxxxxxxxxxxxxx>,
>        "Marjorie L. Moorefield" <minx32@xxxxxxxxxxx>
>
> >Comments: To: robes@xxxxxxxxxxxxxxxx
>
> >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 :
> ><>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
> ><  and we also have a
> mailinglist ><   the owner is dietmar wessel.>
> >gisela