MND association in Iceland Founded 20. febrúar 1993 INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS Founded in November 1992 MND félagið-GS 2008 1
Points talked about l Who is Gudjon? l About the International allaiance! l Independent living with my eyes! l Active system not passive system. MND félagið-GS 2008 2
Guðjón Sigurðsson l Born 1960 l Plumber l Merried to Halla and we have 3 daugters. l Diagnosed with ALS/MND in march 2004 MND félagið-GS 2008 3
Chairman for the international alliance. MND félagið-GS 2008 4
Hallfríður Reynisdóttir l Halla is born in Reykjavík 1962 l Her task is to help me and keep our family together. l Halla was “diagnosed” with ALS/MND in march 2004 l Do not forget about our families, they often need more help than we the “sick ones”. MND félagið-GS 2008 5
MY FAMILY FEW YEARS AGO Halla, Árnný, Elín Helga, Gaui og María Lovísa MND félagið-GS 2008 6
About the International allaiance! MND félagið-GS 2008 7
INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS 2010 DIRECTORY of Associations for People with Amyotrophic Lateral Sclerosis / Motor Neurone Disease www. alsmndalliance. org www. mndallianceresources. org alliance@alsmndalliance. org MND félagið-GS 2008 8
Over 40 countries are now represented in the alliance! Go to our webpage and learn more. http: // www. alsmndalliance. org/ MND félagið-GS 2008 9
The Alliance’s objectives are: l to increase awareness of ALS/MND worldwide l to exchange and disseminate information l to improve the quality of care l to stimulate and support research l to provide an international identity MND félagið-GS 2008 10
ALLIANCE SUPPORT GRANT PROGRAMME MND félagið-GS 2008 11
Independent living with my eyes! Active system not a passive system. MND félagið-GS 2008 12
User control service! l The disabled person is in charge in his/her home. l Not guests in the service providers house. l Individual value and service. l We look at the need of every individual, not group of different people. MND félagið-GS 2008 13
User control service! l Money follow the individual wherever he/she chooses to live. l Independing living l That is we get user controled service bud not service controled user. MND félagið-GS 2008 14
Our goals l Help where you choose to live becomes nr one alternative. l Less money for the welfare system. l Better quality of life for all, the individual and the family. l Iceland will be nr. one in the world with the best of the best from other systems. MND félagið-GS 2008 15
My experience using User controled service! l Right now me and my family are part of a tryal task for this kind of service. l However we need to get service from 3 systems: Social from both the municipality and the state and then state health service. l The town hiered my wife for full time job to think about me and the family. MND félagið-GS 2008 16
My experience. . l Home nursing comes 3 times a week to help me bath. l The miracle to our family life happened when we got the user controlled service from the state. l We get direct payment from them covering 6 hour help 7 days a week. l This changed our whole family life. MND félagið-GS 2008 17
My experience. . . In stead of Halla beeing working night and day we can now sit in the eavning and talk or do what others do. l Halla has become my wife again instaid of being my nurce and I her patient. l We have family life. l Thanks to the helper that comes in every day and helps me and when I go to work the helper continues in our home with help. l MND félagið-GS 2008 18
Evald Krog MND félagið-GS 2008 19
Remember the most important l Humor is very good for your health. l What is the biggest handicap Evald Krog knows about with any person? l The person that is always grumpy. l Evald moves one finger, uses respirator and has food to his stomach directly. MND félagið-GS 2008 20
Thank you! Kindly ask questions! and the most important: SMILE ! MND félagið-GS 2008 21
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