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----- Original Message -----
From: "Murray Charters" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, October 05, 2003 10:04 PM
Subject: Re: Care Model for Parkinson's


> On 5 Oct 2003 at 20:38, Sandra Lentz wrote:
>
> Hello Everyone,
>
> I would like to share with you my vision of a Care Model for Parkinson's
and the difficulties that I encountered over a
> three year period to have this funded by our public Health Care system. It
appears all our efforts over this period
> have been blocked.
>
> We conducted a market survey to determine the need required in the
community and a demonstration Project with four
> families over a six week period with excellent outcome results.
>
> We presented it to the department of Health and Wellness, Government of
Alberta in 2000. The  Parkinson's Societies
> across Canada, Movement Disorder Clinics, Care Facilities, Neurologists,
Physicians, Hospitals etc. received a copy of
> our brochure outlining the services provided.
>
> SNIP
>
> I would greatly appreciate advice, comments and suggestions, from
listmembers in Canada.
>
> Thank you, Sandra
>
> * * *
>
> Hi Sandra,         Murray Wrote
>
> Sandra, you are the president and founder of a company, Wellness Focus',
that appears to be seeking a share of a pie
> that is jealously guarded by the "Government of Alberta in 2000. The
Parkinson's Societies across Canada, Movement
> Disorder Clinics, Care Facilities, Neurologists, Physicians, Hospitals
etc"
>
> The "problem" is obvious... "They" would prefer you get "your own" pie...
>
> cheers ..... murray
>
> Reference:
>
> Wellness Focus Consulting Services
> http://www.wellnessfocus.ca/
>
> ----------------------------------------------------------------------
> Dear Murray,

I believe you have misunderstood, it may be due to the way I presented it. I
believe you think that I have a big business already in operation and the
Parkinson's Care Model is just one aspect of it. Wellness Focus has never
been in operation nor generated any income. The purpose was to have a care
model  in the public health care system, that addressed Quality of Life for
the Parkinson person and caregiver.

The government suggested that it wouldn't fly on Parkinson's alone and we
covered all neurological disorders.. There was one gentlemen from Health and
Wellness that told me never to give up that we needed to go back to
community. This was needed in our system.

No, I do not want a piece of the pie. When I cared for my husband we
encountered lack of support from Home Care and medical professionals. We
struggled on our own coping with his deterioration and pain. We  had to pay
for services ourselves privately
as I was caring for him 24 hours a day. I would not want any one else to go
through what we did.

I never asked for any money from the government, they suggested I should
sell the services privately for people who could afford it. I could not do
this, however I left the website up for people to see. This was a passion
for me, and I guess this is hard for other people to see. I  volunteer for
Parkinson's families and provide as much support as I can.

In the next week I will outline struggles in caring with no support. It is
all over the world. I hope this helps you to have a better understanding.
Take Care, Sandra

October 21, 2003
To:  All list Members

I would like present our presentation provided to the government of Alberta Health & Wellness to PIEN members in sections every two days. Our Care model fits what is in the news to-day. All I want is to see that we address the issues that the Parkinson's person is dealing with in their daily living. We need research, however we need to meet their unique needs NOW. 

Thanks to the great information below that Murray provided. This outlines the need for improved care for the Parkinson's person. It is now their turn.


SAN FRANCISCO, Oct 16, 2003 (BUSINESS WIRE) -- Results of the "Impact of Parkinson's Disease on the Quality of Life"
patient-based research study will be revealed in a breakfast panel discussion on Monday, October 20, 2003 





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