Dear list members,
I was very glad to see Mary Thompson's announcement of "My Spirit Still
Sings,"  a video by Young Parkinson's Housing of Victoria, Australia. I
first learned about this project about a year ago, while doing research
on young Parkinson's support groups for "When Parkinson's Strikes Early."


One of the Australian PD  organizations referred me to Chris Robie, a
member of this group and one of the creators of the video. After learning
of their unique housing project, Barb and I asked Chris to write about it
for the book. We discovered that both of our projects were trying to
raise awareness about similar quality of life and housing and care
problems that are faced by many young PWP throughout the world. Those of
us on the parkinsn list know about Ivan Suzman's long struggle to receive
assistance at home and remain in his community, and there are many other
stories like his.

Every few months there would be an update from Chris -- as the group's
plans evolved, requiring also changes to his selections -- literally up
to the last possible minute. Their video was recently completed (although
we've been informed that our book is still at the printer's!), and was
presented last week at the National Parkinson's Conference in Melbourne,
Australia. I had the honor of being one of the first Americans to view
it, and  I'd like to share more of my review.

Congratulations to Mary, Chris and Young Parkinson's Housing!
Linda
--------------------------------
Review of  My Spirit Still Sings
A Video produced by Young Parkinson's Housing Inc., Victoria, Australia

Mary has lived with Parkinson's Disease for 11 years, ever since her
diagnosis at the age 39. "Our bodies are going backwards" she says, "But
our minds must go forward." My Spirit Still Sings, an important and
compelling new video about the care and housing problems faced by Young
Onset Parkies, is indeed about moving forward, despite the
ever-increasing challenges of PD. The four young Parkies we meet in this
video - Mary, Chris, Alan and Arthur, all members of the Young
Parkinson's Housing project, have experienced devastating losses. Spouses
have deserted, some have lost their jobs, homes, friends and as Chris
remarks his "easy-going outlook on life." Each has reached the stage
where the progressing disease makes it impossible to remain employed or
to manage daily living tasks without assistance.

Alan, Chris, Mary and Arthur live in Victoria, Australia, but their
stories are echoed by young Parkies throughout the world. Few countries
provide appropriate long-term care options for disabled younger people
with PD. Those without spouses or other care-givers are especially
vulnerable.  Many like 46-year-old Arthur, are forced into nursing homes
for the aged, because there is nowhere else for them to go. Most of these
institutions  do not take into account the special physical hardships and
care needs that many young Parkies face.

We experience a small bit of Arthur's life during the ending moments of
the video, which are among the most poignant, as the viewer joins Chris
and Mary during a visit with Arthur. Plagued by their own advancing
symptoms, together they push Arthur's wheel chair through the nursing
home hallways to his small room. While both are experiencing dyskinesias,
 Mary tries to assist him in composing a letter on his computer about his
children, but Arthur is overcome by emotion and breaks down into tears.

But as the closing of the video indicates this is "Not the end!"  Rather
than remaining overcome by their situation,  the members of Young
Parkinson's Housing are moving forward. They have joined with others in
Victoria to develop new models of care for young Parkies in their
communities. As a first step, they have  identified multi-level care and
housing needs, such as  in-home support services, respite care,
short-term crisis care, long term supported care such as home-sharing,
and different levels of residential care. They hope this video will help
raise awareness of the problem and raise funds to help make their ideas
into a reality. Their project could very well serve as a model for
similar ones throughout the world.

I highly recommend "My Spirit Still Sings."  Parkinson's organizations
and support groups should see this video, and use it as a springboard to
begin talking about care problems facing the Young People With
Parkinson's in their own communities, and brainstorming for new and
creative solutions to these problems.

The video is accompanied by a beautifully written and informative booklet
by Celia Jones, with background information about Parkinson's Disease and
profiles of the four young Parkies featured in the video.
Reviewed by
Linda Herman

For ordering information contact Young Parkinson's Housing Inc.  P.O. Box
134, DARLING VICTORIA  3145 AUSTRALIA.

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