Скачать презентацию MND association in Iceland Founded 20 febrúar 1993 Скачать презентацию MND association in Iceland Founded 20 febrúar 1993

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MND association in Iceland Founded 20. febrúar 1993 INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS Founded 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 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 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 Chairman for the international alliance. MND félagið-GS 2008 4

Hallfríður Reynisdóttir l Halla is born in Reykjavík 1962 l Her task is to 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 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 About the International allaiance! MND félagið-GS 2008 7

INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS 2010 DIRECTORY of Associations for People with Amyotrophic Lateral 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 [email protected] org MND félagið-GS 2008 8

Over 40 countries are now represented in the alliance! Go to our webpage and 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 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 ALLIANCE SUPPORT GRANT PROGRAMME MND félagið-GS 2008 11

Independent living with my eyes! Active system not a passive system. MND félagið-GS 2008 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 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 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 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 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 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 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 Evald Krog MND félagið-GS 2008 19

Remember the most important l Humor is very good for your health. l What 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 Thank you! Kindly ask questions! and the most important: SMILE ! MND félagið-GS 2008 21