I put this on the list, so people who are interested already now can make a
note in their calender.
greetings
Svend
Not that it is temporary, the final program wil be sent when it is ready.
THE THIRD EUROPEAN MEETING OF YOUNG ONSET PARKINSON PATIENTS
IS ARRANGED BY:
THE DANISH PARKINSON SOCIETY
AND
EUROPEAN PARKINSON'S DISEASE ASSOCIATION (EPDA)
New Outlook on the Treatment of Parkinson's Disease.
We are heading towards a new outlook on the treatment of PD. An outlook
that not only gives patients living with Parkinson's disease a better
quality of life and more hope for the future, but also means less cost to
society.
This new revolution in the treatment of PD, can in results be compared to
what happened when the effects of L-dopa was discovered in the late
60-ties. This revolution is on a broader scale, though.
Medically: new, more effective and innovative drugs are introduced or being
developed currently. Drugs with less side effects than the ones on sale
now. As far as surgical interventions are concerned one can conclude that
they turn out more precise, more effective and successful.
In these two areas of the treatment of Parkinson's disease, it seems, a
step has been taken in the direction of resolving the mystery of PD.
Other revolutionary changes in the treatment of PD are "multi-disciplinary
treatment" and "focusing on the patient".
As regards the multi-disciplinary treatment, it has been, because of the
complexity of the disease, necessary to acknowledge that there is a need to
treat the "whole" person living with this illness - to secure a continued
high quality of life despite disease.
Besides having physical symptoms such as tremor, rigidity and on/off
periods, the PD patient can also have learning difficulties and impairment
of memory, suffer from depression and sudden change of moods, speech
difficulties, suffer from autonomic disturbances, as for example
sleeplessness, indigestion and difficulties with sexuality etc.
The achievements of the multi-disciplinary treatment are much better than
the results achieved through ordinary treatment because the different
professionals within their field, work as a team, rather than the patient
going for check-ups and getting mixed information, because no one knows
what other treatment the patient is receiving and what this treatment
consists of. .
As regards "focusing on the patient", research shows that if the patient
is given the optimum information on the disease, emotional support and
concrete instructions on how to cope, the patient manage living with his
disease in a more constructive manner. The symptoms are lessened and the
accept and reorientation in life will be much easier.
The "focusing on the patient" concept is based on a new view within the
healthcare system. The patient's need are taken into consideration when
the programme of treatment is "made to measure" in collaboration with the
patient.
Instead of acting only as an authority, the doctor, neurologist,
physiotherapist etc. becomes more of a consultant to the patient, who very
much takes responsibility for and conduct according to the disease.
These new developments in the treatment of Parkinson's disease have not
solved the problems of the disease but must be said to be an important step
in the right direction.
THE THIRD EUROPEAN MEETING OF YOUNG ONSET PARKINSON PATIENTS
at Hotel Legoland, Billund, Denmark, from 5-7 September, 1997
"Parkinson's Disease - from Limitations to Possibilities"
GOAL
1. Improving the quality of life for Europeans suffering from Parkinson's
disease and their families by sharing knowledge and exchange experience.
The conference gives the patients and the researchers a possibility to
debate and to inspire each other.
The patients have a subjective knowledge and experience of the impact of
the disease on their life.
The researchers have an objective knowledge of the disease, its
consequences and treatment. The goal of this conference, with two kinds of
expert opinion, is working towards a mutual goal: Obtaining a good quality
of life despite disease.
2. Focusing on the patient.
Broaden your horizon and develop mutual appreciation of, in collaboration
with the professionals within the healthcare system, the importance of the
fact that all treatment should, if possible, be based on the patient's own
ability to act and manage on his own.
We know the importance of being able to act and being responsible as an
individual as well as a patient. The essence is the patient's attitude to
his illness and how he deals with living with Parkinson's disease.
We know that when the patient has access to the necessary information
(including access to the latest medical and surgical advice), receive
emotional support and instructions on how to act in stress/problem-related
situations, they manage in a more constructive manner.
3. Multi-disciplinary treatment
Parkinson's disease is a neurological disease that can affect all areas of
a person's life: Mobility:
tremor, rigidity and on/off periods, where the patient is unable to move.
The ability to think, the memory and the ability to learn. The fluctuations
of the emotional life sometimes heading towards depressions. The autonomic
nervous system where speech, respiration, digestion system, sexuality etc.
can be affected. Because of the complexity of this disease it also has a
psychological, social and existential impact on the sufferer.
A multi-disciplinary team is needed to treat the "whole" person living with
this chronic neurological illness.
It is not possible to highlight all topics, but we have chosen subjects
of current interest in Denmark.
Parkinson's disease and the treatment of this illness seen from different
perspectives is the governing idea through the conference. And to have both
aspects in mind in all perspectives of the treatment: What is the best
possible treatment and what can the patient do to improve the condition.
4. Exchange experiences, make acquaintances with the participants from the
different European countries.
PROGRAMME
The conference starts on the Friday afternoon with workshops. Workshops
give the participants a possibility to share knowledge and experiences.
>From experience we know that this active way of getting to know each other,
leads to follow-up conversations, where the participants from different
countries meet and discuss the workshop themes.
The following dinner also allows the conversations and making of
acquaintances to continue. The more formal lectures are scheduled for
Saturday and Sunday - by then the ice should be broken.
FRIDAY 5TH SEPTEMBER 1997
14.00 p.m. Registration
14.30 p.m. Workshop 1: The pharmacist in the patient's life
Pharmacist Edvard Basch, Denmark
Workshop 2: The computer in the patient's life
Mr. Kees Paap, Holland and Mr. Flemming Rasmussen, Denmark
Workshop 3: "Team Parkinson"
Mrs. Vivi Dupont, Neurological department, Århus Hospital, Denmark
Workshop 4: Advice on how to handle on/off periods
Mrs. Ellis Jensen, physical training teacher
15.30 p.m. Tea and Coffee
16.00 p.m. Workshop repeat
18.30 p.m. Dinner
SATURDAY 6TH SEPTEMBER, 1997
09.00 a.m. Opening session
* Welcome Address - HRH Princess Alexandra (Patroness of the Danish
Parkinson's Disease Society - "Dansk Parkinsonforening")
* Welcome Address - Mrs. Mary Baker, MBE, President of the European
Parkinson's Disease Association, London, UK
* Welcome Address - Mr. Erik Tychsen, Mayor of Billund, Denmark
* Welcome Address - The Danish Chief Medical Officer
* Welcome Address - Mrs. Erna Tind Kristensen, President, Danish
Parkinson's Disease Society
09.30 a.m. Surgery - development and status
Dr. Patricia Limousine, Neurologist, Grenoble, France
10.00 a.m. New medication in the treatment of Parkinson's disease
Dr. Erik Dupont, Consulting Neurologist , Denmark
10.30 a.m. Tea and Coffee
11.00 a.m. Depression and dementia in connection with Parkinson's disease
Dr. Leslie Findley, Consulting Neurologist, UK
11.30 a.m. Intellectual, psychological, energy loses and autonomic
disturbances in PD.
Dr. Finn Boesen, Consultant Neurologist, Denmark
12.00 noon Lunch
13.30 p.m. Depression, sexuality and Parkinson's disease.
Dr. Lene Wermuth, Consultant Neurologist, Denmark
14.00 p.m. Changes in the relationship - implications for patients and
carers
Mrs. Pauline Smith, B.Sc., Director of Operations, PDS of the UK
14.30 p.m. Tea and Coffee
15.00 p.m. 1. The patient's experience of surgery.
Mr. Gert Arien
2. The necessity to take responsibility for one's own life.
Mrs. Kirsten Bruun, Journalist and patient
16.00 p.m. Close
19.00 Dinner, music and dance
SUNDAY 7TH SEPTEMBER 1997
09.00 a.m. Disease as a guide to personal and spiritual development.
Attitudes to life as a defence against disease.
Professor, Jørn Halberg Beckmann, Psychologist , Denmark
Hanne Dreisig, BSc., Research Chief
10.00 a.m. Mentality as a factor to reduce symptoms caused by Parkinson's
disease.
Stress-reduction and cognitive therapy.
Professor J.H Ellgring, Institute for Psychology, Würtzburg, Germany
10.30 a.m. Tea and Coffee
11.00 a.m. A long time dying - who will pay for chronic service?
Dr. Beverly Castleton, Consultant Physician, UK
11.30 a.m. The meaning of life - the meaning of disease.
Former Bishop Vincent Lind
12.00 noon Perspectives -close of conference
Mrs. Mary Baker, President of the EPDA
13.00 p.m. Farewell lunch
14.00 p.m. Sight seeing tour to "Koldinghus"
