If a article is not posted, are we notified? I have forwarded two in the last three weeks.  Thank you, Sandra Lentz.





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,
>
> 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, which 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 gentleman 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 PRESENT needs NOW. 

 

Thanks to the great information below, that Murray provided. This outlines the need for improved care for the Parkinson's person. 

 

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 

 

 

My husband Gordon was diagnosed with Parkinson's in 1990 at age 51. Gordon had enjoyed good health prior to this and the diagnoses came as quite a shock. His deterioration was rapid.  I left my professional career to be with him and provide the care he needed. We saw seven neurologist from 1990 to 1998 as it did not act like Parkinson's. We got the same answer from all of them that indeed it was Parkinson's. The following are issues we encountered:

 

-          Minimum responds to the drugs

-          Muscle wasting, although he exercised regularly. 

-          Falls requiring stitches

-          Unbearable back pain

-          Mucous build up causing choking

-          Rapid weight loss

-          Bladder bowel issues 

-           

He was in a wheelchair within five years and held up with straps to hold his body up. In 1998 due to lack of increase in Home Care hours (we were receiving three hours in the last six months) it was necessary to put him in a care facilities. Lack of knowledge of Parkinson's by the health care professionals was difficult and I was there several times during the day. 

 

Gordon and I conducted our own research on the various Parkinson's like syndromes and came to the conclusion that it was Multiply Systems Atrophy and we were told no it was not.  Gordon was admitted to hospital for bladder surgery in 1998, over a period three years this had caused great discomfort. While in Hospital an internal medicine physician conducted various tests, as he felt that Gordon did not have Parkinson's. He was taken off his medications, his physical body became very soft and his Parkinson's like expression disappeared. He could not speak, and responded to us with blinking and squeezing our hand. 

 

Gordon passed away December 1998 after a difficult journey. It was devastating at times trying to obtain support, compassion and caring. During this period of Gordon's life we both talked about the need for a team to address the whole body in body, mind and spirit.  This was how our vision was developed to improve the quality of life for other Parkinson's people needing support.

 

Gordon donated his brain to research and Dr. Rajput research centre in Saskatoon findings was as follows. It was Multiply Systems Atrophy, which was why he did not respond to the medications. They felt there was other issues but could not identify them. 

 

I obtained under the Freedom of Information Act, all Gordon's medical records. During one of his test for back pain it was noted that he had osteoporosis. There were many other areas which maybe on day I will write a book about. 

 

This would certainly account for his pain, if we had been told we would have ensured he was on Calcium Magnesium Chelate. 

 

The wrong diagnoses are not uncommon in Parkinson's and I have seen many, over the years. With early intervention and continuous follow up. this can be identified before it gets to the chronic stages many have to cope with.

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